Tuesday, September 4, 2012

The Misconceptions of Benign Fasciculation Syndrome (BFS)

This is the story of my experience with Benign Fasciculation Syndrome – a misunderstood and ignored neurological disorder involving muscle twitching (fasciculation), pain, fatigue, paresthesia, and cramping. [1,2] My story starts as far back as high school. During my participation in athletics, cramping was a chronic problem. Later, at age 40 following a climbing trip, I noticed paresthesia symptoms in my hands and feet and continuous twitching in my lower legs. My initial thought was it was caused by a neck injury from carrying heavy loads. An MRI on my neck revealed that my disks were not in great shape, but not bad enough to warrant surgery. The doctor did not think my neck was causing my paresthesia symptoms, but had no recommendations other than drinking lots of water to keep my disks hydrated.

Following a move to Colorado four years later, my symptoms got worse. After doing research on muscle twitching, I feared the worst. I could have ALS or MS. I had several visits to my doctor, who asked for blood tests which subsequently came back normal. Mineral and vitamin supplements failed to alleviate the symptoms. My doctor referred me to two neurologists – one to conduct an EMG and the other to do a complete neurological exam, which included an MRI. The tests came back negative and I was officially diagnosed with BFS by both neurologists. A year later I saw a third neurologist because my symptoms continued to get worse and I became more exercise intolerant. This neurologist spent less than 10 minutes with me and concurred with the other neurologists’ diagnosis that this was BFS. All three neurologists agreed that BFS is “no big deal” since everyone gets fasciculations from time to time.

Over the course of the next year I found myself continually complaining about my BFS. I have always lived by the philosophy that complaining without offering solutions is never acceptable. Hence, I decided to use my engineering background to collect survey data in an attempt to find a correlation between BFS symptoms, triggers, body areas affected, and remedies. I conducted research on BFS, and put together an online survey utilizing support-group websites and social networking. My initial goal was to help other BFS sufferers by showing that others are not only going through the same ordeal, but have similar symptoms, body areas affected, and address whether potential remedies alleviate BFS symptoms. My second goal was to bring more attention to the disorder and disprove the idea that BFS is no big deal by doing a complete statistical analysis of the syndromes’ intensity and frequency.

From the data I gathered and the statistics I ran, I have not only been able to statistically define the disorder, but have been able to identify nine unique forms of BFS based on potential causes and triggers inducing its symptoms. These forms of BFS fall under the categories of what triggered BFS symptoms: Stress, Exercise, Illness, Prescription Drugs, Vaccine, Chemical, History, Spine Injury, and Other. [1,2] Considering this uniqueness in what is an umbrella diagnosis, it is no surprise that it is difficult to find one cure or solution to alleviate symptoms. I believe that BFS takes on a more unique form with its symptoms, intensity, and frequency. In my case, there may have been a multitude of triggers including exercise, family history, childhood illness, prescription drugs, stress, and other factors such as alcohol abuse in the past.

I feel that by uncovering the mysteries of BFS, progress can be made in finding the cure for more serious neurological diseases including MS, ALS, and Parkinson’s disease, since early stage symptoms overlap. In medicine, benign is defined as “of no danger to health; not recurrent or progressive; not malignant.” While this disorder is considered “benign” it contains symptoms that are very real and in many cases both psychologically and physically debilitating (Kincaid JC, Muscle Pain, Fatigue, and Fasciculations, Neurology Clinic 1997). Perhaps a more appropriate label is Progressive Fasciculation Disorder (PFD) when symptoms are triggered by anything other than stress. Most importantly, no doctor should tell a BFS sufferer what they have is “no big deal” given the physical and emotional stress this disorder generates. Doctors know little about this disorder. Compassion, research, and follow up with potential remedies are more appropriate actions. Fasciculations in themselves are harmless, but when coupled with chronic symptoms, BFS can wreak havoc on a person’s life. By sharing this chronicle of my experience with BFS, I hope that awareness will be brought to the disorder, and that medical researchers may note that BFS is not an accurate descriptor but a disorder that can also have a chronic and progressive nature. This may facilitate effective remedies or a cure for those suffering from BFS.

Survey and data analysis can be found at: http://patrickbohan.elementfx.com/BFS.htm.

1 Newsom-Davis J, Buckley C, Hart I, et al. Autoimmune Disorders of Neuronal Potassium Channels, Annals of the New York Academy of Science 2003; Vol:998, p202-10.

2 Blexrud MD, Dr. Windebank AJ, Daube JR, Long Term Follow-up of 121 Patients with Benign Fasciculations; Annals of Neurology 1993; Vol:34(4),p622-5.

306 comments:

  1. Do you suppose it might somehow be related to circulation, Patrick? When I lived in Colorado I had terrible problems with my hands, nose and feet being cold, often to the point of great discomfort. It pretty much went away when I moved to Southern California and then to Texas. I assume that’s because of the warmer weather but altitude may have something to do with it as well. If you noticed that the condition got worse when you moved from Texas to Colorado you might want to see if there is any geographical connection between survey participants.

    Just a thought.

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  2. Yes, I do believe altitude is playing in part in my BFS and is a trigger. The bad news is that when I go back down to sea level my condition does not get any better, so the damage to my system does not seem reversible.
    My circulation is fine, that was tested. I was also tested for a condition (do not remember the name) that many locals have. They have to go in to get a pint of blood removed every month because their blood gets thick and blood thinner medicines do not work.
    Altitude is part of my survey and about 7% of the people notice problems at altitude.
    But I think I have had some sort of issue as a youth and other triggers have made it worse over time. I am ADHD and my parents had me see a psychologists when I was young because I was so hyper and could not sit still. Movement is a defense mechanism for BFS because you do not feel your muscles twitching, vibrating, and buzzing. This of course led to learning disabilities because I could not focus. People with BFS do go insane because they cannot rest, or sleep and the muscle activity literally drives them insane. I wish I knew more and I wish neurologists would look into it. It is what it is and I am trying not to complain about it but to fight it.

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    Replies
    1. I've been experiencing the same kind of twitching for about a year now and it started the same time as digestive/gastro issues and what seemed to be an insect bite. I am exploring the idea that it could be related to Lyme disease and plan to get tested for it soon. But tests for Lyme are not very accurate and Lyme disease also has very similar symptoms to ALS, MS, Fibromyalgia, and a host of other issues. But most DR's don't listen to Lyme argument.

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  3. I appreciate your interest in this. My goal is to try to bring more attention to this disorder and help others cope with it. If you go to the user sites aboutBFS on the internet and on Facebook everyone with this disorder is freaking out. They are all scared that they have MS, ALS, Parkinsons, Brain Tumor, or some other deadly disorder. The biggest mistake we make is to look up "muscle twitching" on the internet and you think you may have a few years to live. It is a bummer, but I am really doing okay.

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  4. Are there medications or vitamin/mineral supplements you would recommend that may help alleviate the symptoms?

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  5. Yes, these are all types of remedies tried by sufferers of BFS. However, the success of these drugs and suppliments are usually minimal at reducing symptoms. But each person is different. Like all neurological disorders there is no cure, but we can try some medications in hope of gaining some relief.

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  6. Hello,

    I have had this problem primarily below the rib cage since multiple blast and TBI in Iraq in 2005. I have also developed prostate cancer after the initial treatments I was placed on Oxybutin for bladder spasms and have noticed a decrease in both the twitching and associated pain. In speaking to my fellow soldiers the problem has affected many of us to one degree or another. Just a couple of things to add to your data.

    Good Day

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  7. Hello,

    This is the first time I can express myself about this issue without being treated as a hypocondriac. I've been suffering with fasciculations for two years or more. I have already been to the neurologists, got many tests done and it seems it is BFS, something I can conclude myself, because the doctors have not given a diagnosis (no "big deal", as you say). The thing is that I am almost all the time in pain, sometimes it gets really bad.

    Plus, I have had some episodes of strange movements ("jerking").

    It's getting worse and worse with the time. My muscles twich almost all the time everywhere. Even during sleep. It is really difficult to fall asleep because I have my muscle shaking, I move my arms and hands in slow movements and sometimes I suddenly get awake by violent and rapid movements of my fingers and toes...
    This is really a bummer.

    I appreciate your effort in trying to find an answer to this mistery. It is difficult to know you not only have to live with this, but also that you can't tell anything about it, since people think you need a shrink (as my more recent doctor said..). It is really frustrating.

    Regards.

    ReplyDelete
    Replies
    1. Your symptoms do sound like BFS, but it is important to get furthers tests such as an EMG, MRI etc to rule out other possibilities. But just about everything you mention, I go through.

      Delete
    2. I hear you Andy about the sleep disruption. During flareups, if I can even fall asleep with the twitching and deep ache, sometimes I wake up in the middle of the night with dead limbs that have fallen asleep. I never had that before in my whole life like I have the last 8 months. My nerves seem super sensitive. I also can relate about feeling dismissed as an anxiety ridden hypochondriac. At least now I can point to something somewhat definable.

      Delete
  8. Very interesting to read about this after 50 years. I recently went to a knee dr after a minor injury and he looked at my legs and said, "Wow, you've got fasciculations in your legs!". First I ever heard a name for it. When I was 30 and playing soccer my calves rolled up and down violently and my legs twitched all night long. No pain: just constant twitching. Today, at age 73 and still very active, I keep it to a minimum with potassium gluconate (about 6 a day.) It sure is nice to hear an explanation when drs for 50 years just overlooked it. And, yes, I am hyper active. Thanks for the post.

    ReplyDelete
    Replies
    1. Thanks Porter, glad you found the article helpful.

      Delete
  9. I'm glade I found your blog. I didn't even know the syndrome exist a until a couple of days ago. It all started when I was finish nursing school (under a lot of stress). I started resting tremors. I looked it up, and the prognosis was horrible. Everything I found was bad. I thought, like Michael fox, I had Parkinson's. I went to a neurologist Who ruled out all the bad stuff. But he just said I had "essential tremors". But I wasn't satisfied with that answer, because everything I had read on the internet stated that essential tremors were tremors that occurred with movement. Now, I knew I had resting tremors. My tremors go away with movement. But, he didn't care what I thought. I wish he could have told me about this syndrome. It would have saved me some peace of mind. WOw! That's all I got to say.

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    1. Hi Shea, it certainly sounds like you have BFS type symptoms. I got piece of mind once I had a EMG and MRI. You may want to do that just to make sure. It is odd, but many neurologists do not know about BFS. BFS has similar symptoms to other neurological disorders such as RSD and Fibromyalgia. I think these types of syndromes and disorders are closely related. So I think it is hard for neurologist to definitively diagnose what we have. In any event, these disorders are much more common than all that bad stuff.

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  10. I have recently started with lower lip spasms that appear to be getting more frequent. A few months ago I just thought my lips didn't like burritos since every time I ate one my lip acted up for about 30 minutes. It progressed to hamburgers and sandwiches. Anything that is irritating to the lip. Now it has happened on waking. Meals are a definite trigger still, though sometimes the spasms last all night after dinner. They are strong contractions. I am wondering if this is BFS or if it could be some sort of nerve damage that was done as a result of a massive herpes infection after topical treatment with a chemotherapy drug. The drug caused devistation of my lip and an opportunity for herpes to massively invade. Been on valtrex for 8 months which has helped with lip flare ups but now I have the spasms which interestingly occur where the herpes invasion was. If it continues, I'm headed to my pcp. Just not mentally ready to open a whole can of worms. Wishing it would just go away. At least this blog has given my hope that it's not ALS or MS (not that BFS seems like a walk in the park either).

    ReplyDelete
    Replies
    1. Unknown, it sounds like you may have several things causing / triggering the lip spasms - virus, treatment drugs, and possibly a food allergy (most commonly - gluten). You should probably get it checked out for peace of mind - stress can exasperate symptoms. Chances are in your favor that you do not have MS or ALS and knowing this will help mitigate the stress factor and reduce your symptoms.

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  11. Interesting reading all the comments. I have been suffering from twitching and pain for the last six years. My twitching started after a sinus infection and made me nervous as I thought I had a serious nervous disorder. Had the emg and also had piece of my thigh muscle removed for examination for all the serious nerve disorders. My examination of the muscle came back negative, which was a complete relief. The twitching has minimized, but I get pain in all areas of the body. Some pain can last up to three weeks or longer in one area. This still makes me wonder if there is still something wrong. Just like everyone else my doctors said just live with it. Also, I have been experiencing headaches behind the right ear that just come on and then go away. I own my business and believe this is partly due to stress of everyday working. I have also have taken magnesium treatments for a month and no results in getting better. Its crazy to have all this stuff going on with no answer from my doctors

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    Replies
    1. Hi William, Interesting how every doctor has that "Just live it" mentality. I really think doctor patient care is on the decline. I think medicine is on the decline - the only thing that is helping doctors is advancement in technology - drugs, imaging, lasers, etc.

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  12. This comment has been removed by the author.

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  13. William bertolluci, did you have any quinolone antibiotics to treat your sinus infection. A lot of people, myself included, had their fasciculations begin after gtaking quinolones. Mike

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  14. Hi Guys,
    I'm a 52 year old guy who's been dealing with thyroid issues and some chronic back pain for a number of years now. In the last couple of months I've been getting constant facsiculations, mostly in my legs. The worst part for me is the constant muscle fatigue. I'm a big cyclist and I was starting to get into good shape this summer. Now my rides are getting frustrating because my legs feel like I've already done a hundred miles before I set off.
    I'm waiting for my neuro appointment - still four weeks away, and of course I'm getting anxious. I don't think it's anything really sinister since I have no real weakness, just a lot of fatigue. Still .....'not at all happy about this.
    Thanks for providing some good information and a place to discuss this.

    Ian.

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    Replies
    1. Hi Ian, it is quite possible my fasciculations started because of strenuous exercise. My legs have been non-stop for the better part of a decade. If you have had this for several months and no atrophy, that is good. Fatigue and weakness is not the same as atrophy. I biked today up to Cottonwood Pass in Colorado (About 38 miles round trip and over 1300 meters in elevation gain - the Pro Cyclist will be coming over this pass in 2 weeks) and it takes everything I got these days - my hands and feet go numb and the pain in my arms and legs is intense, but I fight through it - got to keep going.

      Delete
  15. Thanks for your really quick response. There's definitely no atrophy. If anything my legs are more cut than ever with all the exercise they're getting while I try to sleep.
    Are you saying that strenuous activity can actually cause BFS? One particular push to the max, or just a history of working out at a high power output? Does a long period of rest alleviate the symptoms or make no difference?
    I really live to ride. 'Never did Cottonwood, but 'Rabbit Ears pass' was a regular haunt of mine when I used to live in Steamboat.
    Thanks again. This really is great info,

    ReplyDelete
    Replies
    1. Yes, in my study, about 15 to 20 percent of all participants (we are approaching 400 people in the survey) believe their BFS was triggered or caused by strenuous activity. My guess is that most of these people were doing strenuous activity for some time and then symptoms occurred after one event - like me (a trip to climb Denali). To me, rest does not do anything to help alleviate symptoms, so I just fight through it and continue to exercise (maybe not as extreme because of the intolerance).

      I think the Pro Cycling tour goes over Rabbit ears pass also!

      Delete
    2. Interesting, and disheartening at the same time. I used to feel so energized after a hard ride.
      I'll participate in the survey if I get a formal diagnosis.

      Delete
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    ReplyDelete
    Replies
    1. Thanks Sakib, I checked out your site, it is also very interesting. Thanks for sharing. I now know where to turn to for back spasms.

      Delete
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    ReplyDelete
  18. Hi,

    I have had twitching in a back muscle for at least 6 weeks. I play high level squash and just assumed I had irritated something but it isn't getting better. I am extremely high anxiety and have been under tremendous stress. The twitches are very pronounced but do not cause spasms (pain). I am going to the doctor on Wednesday but in Canada it will be many months before I can see a specialist. I don't seem to have any weakness as I continue to play high level squash. I haven't been sleeping very well and do seem to awaken by sudden movements. I am 39.

    ReplyDelete
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    1. Hi Craig,

      Hard to say this early on, it could be nothing at all and go away. Really bad things like ALS proceed very fast and the fact you are still doing what you did before the twitching is a very good sign. Let us know what the doctors say.

      Delete
    2. The doctor didn't seem concerned about ALS/MS at all. He didn't refer me to a neurologist. He did say he would perform a full physical in two weeks including a neurological exam. He attributed it to my extreme anxiety and prescribed me Cymbalta. I still have lingering doubts but I guess I'm mildly less concerned now ;)

      Delete
    3. Great news Craig. Please do not hesitate to ask any questions. Anxiety and certain prescription drugs are definitely triggers for BFS symptoms.

      ALS and MS progress so fast and if you have no atrophy it is highly unlikely you have that. I would trust the doctors initial exam.

      Delete
    4. Just wanted to update my status. I saw a neurologist who said that there was a 90% chance it was BFS. She ordered an MRI and EMG. I had the MRI on Sunday and it was normal. I went in for the EMG today and neurologist did a full exam and nerve conductivity. He said he would perform an EMG if I wanted but was certain it was not ALS so I declined. He said to contact him in 3 months if I had further concerns but as it stands now I am a member of the BFS club.

      Delete
    5. Hi Craig, That is good news - BFS is better than most alternatives. Hopefully, you can control most of your symptoms so they do not get too unbearable. I wish you the best.

      Delete
  19. A few years ago I was having horrible headaches. I am a migraine sufferer, but these were different and they were isolated around my right eye. I had a MS workup and thankfully everything came back negative. Except, my neurologist, at the time, thought it was early MS and I should start injection therapy. I declined. Eventually I was directed to a neuroopthalmologist, and diagnosed with trochleitis. She injected that muscle with cortisone and NO MORE headaches!

    Three weeks ago I noticed that I had fasciculations in my calves. I am 41 years old and an avid runner. I've been fortunate to have no serious injuries due to running. So the thought of these twitches caused by running seems bizarre to me. I drink gallons of water so dismissed the thought of dehydration. The only prescription drug I take is an HRT. Aside from that I take a multi-vitamin and 81mg aspirin.

    Over the course of the past week these fasciculations have become more intense, interupting my ability to fall asleep. In addtion, they are now present in my hamstrings/glutes and quads just above me knees. My physician doesn't have a 'no big deal' mentality and discussed multiple causes including my previous history and workup for MS, as well as vitamin deficiencies and stress, and of course ALS and MD. I don't necessarily have pain, but my legs feel heavy. The constant twitching is definitely annoying.

    I did have bloodwork and an MRI yesterday, both of which came back negative. Per my physicians recommendation, I will follow up with my neurologist, but I'm also consulting with my chiropractor who will have a more holisitc (vitamin/mineral supplement) suggeston for me.

    Thank you for the information.
    Jennifer

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    Replies
    1. Hi Jenifer,

      Thanks for sharing your story, all of with BFS know how difficult the process is of being diagnosed and we wish you the best. Exercise can be a trigger for BFS symptoms.

      It is most common for BFS to affect your legs, especially the lower leg. And yes, this can be stressful because it interrupts sleep and this in turn can make symptoms worse. Having a heavy feeling is also common - your legs are working overtime.

      An EMG can conclusively tell if the fasciculations you are experiencing are benign.

      Most General Doctors will take these symptoms very seriously. Neurologists, on the other hand, will say what you have is no big deal(if you are diagnosed with BFS) - everyone gets them. They do not seem to understand the debilitating nature this aliment can have if the symptoms are 24/7/365.

      Remember, there is a difference between muscle pain and atrophy.

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    2. Thank you for all of the info. My fasciculations started this past weekend, suddenly out of the blue for no apparent reasons. Needless to say I have been in complete panic all weekend with all of the Internet searches on fasciculations. Obviously, I have not stared testing yet. I have had so much anxiety that I am unsure what is "normal" for my body to feel anymore, but I feel every little twitch, tingling, leg heaviness, fingers stiff at times. Trying to convince myself that you don't go from feeling ok to ALS in 72 hrs. Has anyone experienced the sensation of feeling like your feet are "damp" when they aren't? That is another strange sensation I have developed this weekend.

      Delete
    3. You may be having an anxiety episode. try to minimize your stress levels and see if your symptoms improve. Since this is early on for you, if you can control your anxiety levels you may be able to mitigate and remove symptoms. Everyone gets fasciculations and for most people they go away. Yes, all of the symptoms you feel can be BFS, but let's hope you can get these symptoms to go away.

      Delete
  20. I'm also bookmarking your blog. For almost 4 years, I've been through just about everything you have (same tests, same diagnosis), except lately I have so many aches and pains that the doctor just declared me as having fibromyalgia, too, which opens up more medicine therapies. I was doing some web searches tonight, debating if an SNRI will ease the pain or just complicate everything. Have you tried any of the new pain relief drugs?
    Oh, what complicates my case (and what made the docs give me all the tests I wanted) was that my brother died from ALS. So far, so good for me. I'll take BFS over ALS. As far as I can tell from research, there's little connection between the two diseases... conditions...? Don't know what to call them.
    Be well and keep blogging!

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    Replies
    1. I actually think I may have fibromyalgia as well. There is so much overlap between symptoms among neurological disorders it is confusing and hard to specifically diagnose any of us twitchers.

      I use Lyrica. It helps with one symptom, muscle vibrations. However, every other symptom persists. Lyrica is also used for fibromyalgia treatment.

      I hope to have a study posted some time next year based off my survey data. Hopefully that tells us a little more, I am also trying to get a neurologist to help me out - but no luck on that front, but will keep trying.

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  21. Just wanted to update since my last post. I am now a month into these fasiculations. 80% in legs! but they can be anywhere. Clean EMG lower, upper showed carpal tunnel. MRI head normal, MRI cervical shows bulging discs. I already have scoliosis with rods placed about 30 yrs ago, so my back is generally a mess to begin with. My issue is that my neurologist won't really give me a BFS diagnosis. They seem to be baffled. My clinical neuro is normal except brisk reflexes. All lab work has been normal. What does it take to get a BFS diagnosis? These symptoms have taken over my life.

    ReplyDelete
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    1. Neurological disorders are hard to diagnose for many reasons. Mainly, because symptoms overlap. I have diagnosed with BFS, but feel my symptoms may be closer related to Benign Cramp Syndrome and even Fibromyalgia. I think this makes it tough to diagnose BFS with 100% certainty. Spine injuries can be a reason - our backs actually begin to degenerate normally at age 25.

      Hopefully your symptoms will go away. If not, the hardest thing to do is to accept them and move on with life because these symptoms are hard to ignore and affect our sleep and stress us out. I completely understand. Hopefully the neuro will be able to make a diagnosis so you can start to go on with life.

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  22. Hi, I have been having strong muscle contractions in my right eyelid for over 7 Months now and was told initially by my GP that it was nothing to worry about and it would go away on its own. Well it hasn't and now I am getting these spasms in both my hands (middle fingers) and both my thighs, the eyelid twitch is now worse than ever and is constant and feels like someone poking me in the eye all the time and blurs my vision. Lately I have been really losing my temper with it and it is ruining my life now, I cant read, watch TV or spend much time on my computer because of it and it really is driving me insane. Doctors really should not trivialize this complaint as they do. I dont know if my problem is BFS and I dont even know if this is a recognised diagnosis in the UK but I sure wish I could get to the bottom of it. I have been on long term (7 years+) medication for pain relief (Dihydrocodeine) for lower back pain, Propranolol for anxiety , Zolpidem for sleep issues and Amitriptyline for depression, I recently had a long course of antibiotics for a dental infection and dont know if that was the catalyst or whether it is due to stress and lack of proper REM deep sleep due to the sleeping tablets. I even thought it might be not enough daylight as I rarely go out of the house. I have tried multivitamins and Magnesium supplements which did not help at all. Oddly My son was diagnosed with ADHD. Personally I have always suspected I might have developed CFS or FM over the last 3 years as I am always totally exhausted and tired and I have pain in all my muscles. All my symptoms are very similar to those of CFS & FM but I have never been diagnosed but noticed there maybe a link. Anyway I have not come on here to moan about all my health problems but to add a bit of data about myself to your excellent Blog in the hope that eventually we can get to the root cause of this affliction. I do not believe I am a hypochondriac, I just try to get on with things but this is really getting me down now. Got to go, eye is going crazy. Just wanted to also know if any of this sounds familiar to other sufferers.

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  23. Sorry I forgot to mention other things that may be of some relevance, I am always itching and have mild seborrheic dermatitis. I always seem to be sweating profusely and have very oily skin. I have dreadful short term memory & any form of exercise kills me.

    ReplyDelete
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    1. J Sampson, I can certainly empathize with your symptoms. These symptoms drive us all crazy. Many of what you mention affects us all - I have folliculitis and sweat profusely as well. Many people noticed their BCS symptoms starting after taking some medications, such as anti-depressants - this could have triggered your symptoms. I am no doctor, but it sounds like you have something like BCS, BFS, or FM. Unfortunately, what happens to many of us with BFS we get stressed out by the symptoms and it just makes conditions worse - we lose sleep and fret over fears of it being something worse. My only advice is to try to find something that relaxes you and go to that state. Exercise intolerance is also very common, but I force myself to go outside and exercise every day. I do not want to or like to, but I feel better than camping inside all day.

      Hopefully, in the near future, we can bring some attention to this disorder and stop having doctors just pass over it like it is no big deal. What you are experiencing is real, you are not crazy.

      Delete
    2. Thank you for your suggestions, and for replying so quickly. I do notice that when I am grossly occupied with an activity I notice it less but it is still very annoying. I saw my GP again today and he has booked an appointment with the neurologist in a Months time so we'll see what they have to say but I'm not holding my breath. I would have thought in this day and age there could be more my GP could do, i.e. some muscle relaxant or eye drops to make the problem more tolerable but as I said they don't really seem bothered. I have heard though that in some cases Botox can be injected into the area with the problem which is supposed to help. I would be interested if you or anyone else on this Blog heard this?

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    3. I have not heard anything about Botox helping fasciculations. Unfortunately, most treatment is very uniquely individualized. In other words, every person is different. Hence, most go through a trial and error process to find minimal relief (I suppose some relief is better than none). What's worse, the most successful treatment methods are those meds which inebriate us, such as benzodiazapines drugs. This is why we need to do more research. Muscle relaxants do help a very small population of people with BFS.

      Delete
  24. Hello!
    I am a brazilian guy!
    First, I apologize for my english, I wrote this text with the help of Google translator.
    It was very nice to find your blog and see that, unlike the doctors, there is someone struggling for an explanation.
    I'll tell you a little about me and my case, just to add to your data, because I understood that you have made a crossing data, and this is very important, ingenious mind might be all we need!
    Well, come on, I always for life had fasciculations without even knowing obviously that term, but these had muscle tremors, normal, as in all people. One day possible in the calf, another day in the eyelid and in times of stress, the muscles of the head, side and rear (thought to be pulsating veins). There are about two weeks, I began to bother with it and realize that somehow it became widespread. Now I feel all the time and I can not even define where and how. I can not associate any pattern. Gives head , arms , legs , back, stomach , abdomen , small muscles , perineum , below the chin , muscle in the middle of the abdomen.
    What I feel everything that preceded it, was a year of mega stress and anxiety. The year I suffered with something very strange, seems to affect my diaphragm. It's like a rush of air pass by there and get me out of breath in a coup momentary. I went to the cardiologist to rule extrasystoles and other problems. Really have few extrasystoles and I can feel them! But at other times, it seems not . Now be afraid fasciculations in the diaphragm , do not know if this is possible (what do you think?).
    Sure , I went to Dr. Google. I was always very anxious symptoms and always seek information on Google. I've done treatment with anxiolytics and have had episodes of panic disorder. Importantly it.
    But this time it was genuinely very scary because of the associations with ALS, because I have 30 years and two very young daughters , 6 and 1 year.
    The terrible fear seized me and the result was that the fasciculations increased terribly, even after reading about the details of the EMG, and know about fibrillations, I began to feel a kind of shock in some very small fingers of the right hand. What bothers me more are some tremors in his left leg , are the weirdest . I searched the neurologist who reassured me enough, did some clinical tests to see if I had some kind of weakness. Importantly, I have no weakness or cramps or spasms, or atrophy. Wanted to know the opinion of another doctor, who was very angry with me and wanted to send me to a psychiatrist. I refused. Said of my psychic conditions, I understand, I'm here looking over my neurological conditions .
    Overall, I still do not have my exam is scheduled to take place a few months ago. It is difficult to keep quiet. I read an interesting article by a doctor (Rocco) who do not know the source, explaining that this is normal, many people are crazy about these symptoms, but made it clear that when a patient has ALS fasciculations usually the doctor notice other symptoms he had never noticed. So fasciculations without other symptoms, do not form concern for doctors. In another article, read the contrary, that in months fasciculations may precede weakness, atrophy, etc. THIS IS MY BIGGEST QUESTIONS IN A LOT OF TIME AND WOULD LIKE YOUR OPINION.
    Overall, I also feel as if little insects were walking on my left leg, very rare, but it happens. Now I have noticed strange pain isolated, sometimes on the left wrist, sometimes right thigh, sometimes on foot, will migrating from place, sharp pains, not strong, supportable, passing very fast.
    In closing, I read an article by a neurologist saying that the possibility of numbers, a carrier BFS evolve into ALS is the same as for the general population!
    Blog liked, liked their initiative and want to work here always putting my test results and my research.
    Big hug to friends from up there!
    Down here it's hot and everyone prepares for the 2014 World Cup, while our government deceives the people and steal shamelessly.
    Be at peace!

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    1. Hi Marcel,
      Actually, you can still have BFS and have other symptoms such as muscle pain, weakness (not the same as atrophy - this gets confused), pins and needles, numbness, fatigue, cramps, and so forth. I have all of the above symptoms for over 5 years and some BFS symptoms for nearly 40 years.
      There is no evidence that people with BFS are more likely to get ALS or MS. Several papers cite this fact and I have found only one that does not - but in my opinion this paper, like most medical papers, is flawed because of an insufficient sample size.
      Unfortunately, doctors think BFS is "No big deal" because everyone gets fasciculations. What they do not understand is that some people may get BFS chronically (24/7/365). And if you have it chronically you must be "crazy" is not the correct way in diagnosing issues.

      I am not a doctor, but what you are feeling sounds BFS like. It sounds like if you can help control your stress levels you may be able to control your symptoms more. Try to relax and enjoy your family, exercise, eat right, etc. and see if this helps you out.

      Unfortunately, the US may be going down the same path as Brazil with ObamaCare - time will tell, but government intervention usually creates more bureaucracy, waste, and fraud in my experience. I hope I am wrong.

      I am hoping the US can make it at least to the quarterfinals next year in Brazil. If I was a betting man I would take Brazil over the entire field to win it 6th cup (I think they have won 5, right).

      Delete
    2. Thanks for the comments!
      Now I look forward to the EMG, once you have the result, I come here to talk to you.
      I notice that when I wake up, I have no symptoms, they are appearing slowly, the extent to which I will awake. I also feel something like you, sometimes wake up in the night to go to the bathroom and my hands feel weak and sometimes the feet. No explanation. It is only sometimes, not very recurrent. Days ago I felt this difficulty in breathing and speaking, like a respiratory weakness, along with weak hands and speaks very weak. I think it's because I was passing a period of much mental stress, having read so much and thought too much, and be sleeping late and waking up too early every day. I confess that I'm sure it's all benign here, but I can not let the fear aside, I think sometimes the worst, in association with ALS and etc. . I think I need a psychologist, soon! I will live every day, trying to improve the stress and anxiety and see if the symptoms subside. I want to participate in their research, how do?
      Thank you for your opinion about my case and congratulations on your initiative in this work! Surely you started something great!
      Ps: I did not understand the reference ( 24/7/365 ) and it is important to note that I was confused about the association with stress, because the stress, through everything I've read, it seems as areas that are affected calf, eyelid, etc. . In my case, there are days that looks like a worm moving through my body, I count multiple instances in about 5 minutes. In many places that you can not even to describe! I hope this is a normal feature of BFS and do not have to worry about it being something connected to ALS, where I read a few things saying that fasciculations usually come after weakness, but this is not a rule. Anyway...
      Big hug and do not believe that Brazil go up a new cup so early . It has a lot of politics involved! :)

      Delete
    3. 24/7/365 means you have symptoms all the time - 24 hours, 7 days a week, 365 days of the year. Stress will wreck havoc on your body and cause symptoms anywhere on your body (as is your case). Easing stress will reduce symptoms. Your EMG will tell you what you have for sure. Once you this is done you join my survey: http://patrickbohan.elementfx.com/BFS.htm
      I am hoping and wishing for the best when you get your EMG.

      Delete
  25. hello friend Bohan
    also punched in Brazil, I apologize for my English, everything start to hum almost year ago, with fasciculation thighs ai Dr. google search, there turned that movie that everyone knows, I truly think had als, was ruled that a neuro als but continued with fasciculation, have vibration in my palms of hands, some few fasciculation diaremente throughout the body, I am diabetic with high blood glucose, searching the internet I found that alata glucose affects the myelin, but I have doubts about it, do you think diabetes can be um trigger for bfs.
    att
    olimpio

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    1. olimpio, Diabetics can have a history of muscle issues including BFS like symptoms - twitches, vibrations et. al. This is probably the reason for your symptoms.

      Delete
    2. good afternoon
      here in Brazil too medical or majority does not accept quef asciculações hum can be activated by a poorly controlled diabetes, ah forgot to say I'm 38 years old, the interesting already doing some exercises comes my spasms but not last more than two days, I'm vibrating light on left hand finger, I wonder if it for their studies and common symptom of bfs, or can not worry about als.
      att
      olimpio

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    3. Everything you mention sounds like BFS symptoms, but the only way to know for sure is to get an EMG. If you have BFS symptoms without any muscle atrophy than you do not have ALS. The key is muscle atrophy.

      Delete
    4. GOOD NIGHT BOHAN
      Depending SYSTEM OF PUBLIC HEALTH AND HUM EMG NO MINIMUM 6 MONTHS, BUT HERE 10 DAYS FARA HUM YEAR BEGAN WITH MY TORMENT Fasciculation AND ITS CONNECTION WITH ALS, THIS TIME HAD MOMENTS OF WEAKNESSES THAT PASSED AND NEVER NOTICED ATROPHY, NORMAL FORCE AS ALWAYS
      ATT
      OLIMPIO

      Delete
    5. Weakness is not the same as atrophy. If you have ALS it will progress very fast. So if you have the symptoms for a long time - months - without atrophy it is more than likely not ALS.

      Delete
  26. I am having a hard time figuring out if what I am having is spasms or twitching. I noticed the day after my uncle died unexpectedly was when the constant feeling of contractions in my legs and abdomen started. This was this past April. I chalked it up to stress. Well, it hasn't gone away and I can't see anyone about it until I am not pregnant anymore. I got pregnant in August so I know it isn't connected. Around the same time I was having problems with gluten, migranes, and magnesium deficiency, and night sweats after eating gluten Well after going gluten-free everything is back to normal except the fact that my muscles contraction numerous times throughout the day only when sitting. I keep wondering if this just left over from stress from April... even though I am feeling stress free? So, are muscle contractions/spasms the same as twitching? I of course keep thinking the worse from google searches! Does this sound like BFS? I have been thinking of exploring accupuncture to help it. The only other thing I can think of is at the same time the twitching started, I had started a prescription for lamisil an anti-fungal. Do you have any insight to hold me over until I go to a neuro? Thanks!

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    1. Hi Hemmy,

      Sorry you are going through this situation with your health. I am not a doctor, but what you are going through does sound like BFS or something similar. All the things you mention Gluten sensitivity, low magnesium, pregnancy, certain prescription drugs, and of course stress can trigger and or exasperate symptoms. Things like ALS progress fast and over 6 months without any atrophy is certainly a good sign. My wife moved to a gluten free diet and she also had headaches and night sweats before changing over. She has researched this area very well and there are definite links between gluten and some nervous disorders like BFS.

      I have mostly what I would call twitches, but do get what I would classify as spasms from time to time. Spasms are more severe in my opinion because they jerk the muscle more. But spasms are all part of BFS as well. You could have BFS but hopefully it is just something like a magnesium deficiency that only needs supplements to fix. It seems many symptoms to neuro disorders overlap, so it is hard to guess. But as I said severe Neuro disorders move fast and that does not seem to be the case with you.

      Feel free to ask more questions and try to keep stress at a minimum. I use exercise to help me with that.

      Delete
  27. Emily Hemily aka Hemmy... I think different gmail account anyways.... Thanks for your reply! Very interesting to hear of other people having the night sweats with gluten. I have read it is a symptom in forums but when I mention it doctors they have never heard of that as a symptom. But for me they have clearly proved to be linked. I got glutened a few times this summer and then it came back for like a week. Then gone! My muscle spasms are jerky but are very mild, mild enough to annoy me through out the day. I keep thinking there might be something in my prenatal vitamins (gluten free) that might irritate this. I stopped taking them for a few days and the spasms went away but then came back after a few more days so then I started the vitamin. I should try to go off of it again and see what happens. I have also noticed just recently I will get leg cramps in the middle of the night which will almost take place of the muscle spasms. i won't feel the muscle spasms during the cramping. I'll take the leg cramps over the spasms any day. My magnesium levels are finally better after going off gluten and supplementing with CALM. I keep reading about myoclonus and feel it best relates to how I feel but I don't know if the jerking they are talking about are big jerks or mild ones like the ones I have?! Thank you so much for your time!

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    1. Emily, cramps are definitely a big part of BFS. In fact, I think I have Cramp Fasciculation Syndrome but have been diagnosed with BFS. It is definitely good news that you are aware of vitamins and things that may make symptoms worse. And it is encouraging that many of your symptoms are not 24/7. This may indicate if you find that right balance of nutrition you may be able to rid yourself of symptoms completely.

      Delete
  28. hello everyone, its my 3rd week suffering from these fasiculations. 3 weeks ago i had a kidney stone pass, and it was the worst imaginable pain ever in my life. it shook me a lot. strangely that night, on a superficial muscle on my abdomen i felt my first fasiculations. it was like a butterfly on my abdomen. kept like 1 min spasms and gone then came again. after that night i began to feel similar fasiculations all over my body, but with very low amplitudes, just come and go...for a week i didnt care a lot, but after then it began to effect me mentally, and thinking ALS on my mind, i went to a neurologist. the doctor made a lot of tests, including blood tests, calsium, magnesium, potassium levels, thyroid tests, and lots of other blood tests which i cant remember. she also made an EMG, also managed to catch a few series of fasiculations. but all the tests were negative. she asked me about any depression or stressfull times i may be living. and yes i am a PhD student, and having serious stressful times. and i told her that im kinda anxious about my fasiculations might be an early signals of some serious diseases like ALS. she wanted to try an antidepressant and also wanted to see the effect of an antiepileptic (karbamezepin). i used Xanax for 3-4 days, and the fasiculations seemed to be lesser and lose its magnitude. but that night when i used the carbamezepin, it was the worst fasiculations i ever had, i didnt take another pill, and called the doctor. she told me to drop the antiepileptic. this my 3rd week and fasiculations mostly appearing on my legs but never go away, they are always there, but with little magnitudes, like just a little tremor on any of my muscles just saying "hey im still here". tomorrow i have another rendezvous with my doctor, she wants to make some other "rare" otoimmune syndrome tests. i also asked her to make another EMG. its not a big deal physically, at least for now, but mentally i'm collapsed, the probability of a serious disease is killing me...

    ReplyDelete
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    1. Burak, an EMG checks for ALS and the fact you had one and the doctors found no evidence of ALS is a very good sign.

      And as with you, having fasciculations in the lower leg is the most common place for BFS.

      Try to relax and try to find some activities that will reduce your stress level and see if this helps reduce your BFS activity.

      Delete
  29. Hi there,

    I was recently diagnosed with PNH at UCLA. I had shingles in March of 2012 and the twitches started then and never left. I have cramping in my shoulders, feet and calves. I can manage the cramping by not wearing heels, carrying heavy purses, or swimsuits that tie around my neck. I take flexeril on occasion as needed.
    As i have slowly been increasing on gabapentin the twitches have mostly gone away. They come back when I travel, have a cold, or generally overexert myself in any way. My sleep is ok now that I take gabapentin but sometimes I jerk myself out of my sleep. I have exercise intolerance, muscle aches, and random days of chronic fatigue. Basically the classic presentation of this AWFUL syndrome.
    I just make sure to keep an exceptionally positive attitude and outlook on life, despite it! I work out regularly (former x-country runner, still avid hiker and cyclist) and find Bikram yoga extremely helpful. Meditation is wonderful too :) I am going in for a hernia surgery on Wednesday- which is a huge worry- considering anything that stresses my body makes my PNH react strongly.
    Thank you so much for what you do, Patrick. This blog has given me more strength than I can tell you. One thing I wonder is, do you know of any alternative remedies that have worked for anyone with this condition? I hate the thought of being on medication forever.. but I am also willing to do whatever it takes to live the productive life I desire!

    Thank you!

    -Michelle

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    1. Thank you, Michelle, for the kind words. I am glad this helps and really wish I could do more to help. I hope to rewrite my documents some time next year retaking the correlation data (hopefully the sample size will be more than 500).

      I have not found anything that is helpful for me. Like you, I take an anti-seizure medication - Lyrica (you take gabapentin). It helps me with one symptoms, but everything else persists. According to my study the only things that help, a little, inebriate you - Benzodiazapines (valium) and sleeping pills.

      It sounds as if you have the right attitude moving forward. Acceptance is hard, but once you do that you can move forward. You got to try to live life to its fullest and do those things that make you happy, even if it makes you uncomfortable or hurts. I hike, bike, weight lift, run, wrestle, and so forth everyday - it hurts more than anyone can imagine, but I feel better about myself.

      Keep up with the good fight and never give in.

      Pat

      Delete
  30. I've been living with BFS for 4 years now, and it was getting really bad about 6 weeks ago, almost debilitating, I couldn't sleep with the muscle twitches, and I found functioning during the day to be really hard. After reading some posts, and talking to be some people in forums, I decided to go gluten-free and found after about a week my symptoms started to lessen and have continued to decrease and/or stabilize into something I can manage much more easily. And most importantly for me, I can sleep normally again.

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    1. Thanks for the feedback Tyson. Yes, there are lots of people who develop food allergies later in life and a tough lifestyle change like going gluten free can cure them of BFS symptoms. My wife is in the same boat as you.

      Delete
  31. I just wanted to update my status as I believe I know what is responsible for my muscle twitching. About 9 months ago I started taking zopiclone for sleep problems. I took it everyday. After two months I developed a tolerance for it and I had to increase the dose. Benzos and z-drugs cause your nervous system to down-regulate GABA receptors and up-regulate NDMA receptors. This often causes muscle twitching (along with about 30 other symptoms). I was on this drug for 8 months before I made the connection. I joined a support group where I discovered that most other people who became addicted to sleeping pills or benzos also suffered from muscle twitches. There are hundreds of discussions on the subject but this is a classic example...

    http://www.benzobuddies.org/forum/index.php?topic=96816.0

    I'm sure this doesn't apply to everyone who comes across this site but it probably applies to some (which is why I wanted to share it). If you've been taking any CNS depressant for an extended period of time (this includes alcohol) it could be the cause of your twitching.

    I've been off sleeping pills for 6 weeks and still have muscle twitching. I've been told that it can take a year or more for your body to re-adjust and in some cases it appears to be permanent.

    If you've been taking CNS depressants (hypnotics, sedatives, etc.) you can read about the side effects here...

    http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome

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    1. Thanks Craig, this is good information. We all appreciate the feedback. Ironically, many people find relief from BFS symptoms by taking valium and sleeping pills. Maybe that is a vicious cycle.

      Delete
    2. I've had muscle twitching in my legs for years, but last feb developed a persistent muscle twitch in my left tricep. It comes and goes all day long. Ive had an emg with the results stating chronic motor axon loss with no nerve degeneration. My neurologist said I was fine. I have no other symptoms, no muscle loss, no fatigue, nothing other than tinnitus and these muscle twitches. Sometimes the twitch is like someone is punching me in the arm. Does this sound normal? I am 62. In good shape and feel great, except for the panic and anxiety these twitches are causing me. MS is in my family so I worry about neuro diseases lurking. If I knew for sure, it was just BFS, which was diagnosed, I wouldn't pay attention. It's the wondering "is it something progressive". Anyone have similar symptoms?

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    3. Hi Karenmg, yes what you are experiencing sounds like BFS especially if your neuro concurs with that analysis. That being said, MS has similar types of onset symptoms, but if this has gone on for years with no atrophy it is highly unlikely it is something serious like MS. One way to know for sure is to have a brain MRI and maybe that will ease your anxiety when it comes back negative and then you can relax and better control symptoms. BFS can also be progressive and get worse in people over time. So even if it is getting worse it does not mean it is something more serious. My advice is to stay active and do things that minimize stress and see if that helps your condition.

      Delete
  32. I was diagnosed over 1 year ago with BCFS and am 60yrs old. Along with all the common symptoms of BFS I have chronic muscle Cramps/spasms all over my body. I have had 3 EMG's 2 MRI's from the University of Virginia- ALS Clinic. EMGs showed hyperactivity of the muscles tested and the neck MRI showed 2 bulging discs and lumbar MRI showed degenerative arthritis. Many blood tests for everything in the book all negative. All of these of course was to eliminate ALS ,MS etc. But the muscle twitching is constant and all over my body 24/7. The cramping (like charlie horses) is in my legs, hips, arms, stomach, back, neck and can pulse like the twitch does. Painful. I have fatigue, weakening in my arms and exercise intolerance. UVA tried many drugs to help with the cramping and finally found one drug called Trileptal to help control the cramps because they were interfering with my daily work and activities. They also put me on Zoloft for anxiety and Klonopin at night to help sleep. Can this type of BFS be progressive and disabling???? I can tolerate the constant twitches and have learned to ignore and go on. But some days the buzzing/cramping feeling all over my body and the fatigue is really bad and I haven't been able to identify any triggers outside of day to day stress that cause it. When I have these bad days I am so fatigued with sore muscles the next few days that I can hardly function. I am always concerned that they have missed something and the attitude "It is what it is" very frustrating. I bet they don't know what it feels like!!! Wish they could find something to help all of us sufferers....

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    1. Hi MCourtney, yes, BFS can be progressive according to the data I have taken. BFS seems to be progressive and get worse over time in people who feel their BFS was induced by anything other than stress. People with anxiety induced BFS are more likely to be able to control symptoms and have them improve over time.

      It is always easy for someone without the disorder to shrug it off as no big deal - especially doctors.

      My advice is to fight hard through those bad days and try to remain active.

      Delete
  33. I was diagnosed with bfcs four years ago. I have lived with all the symptoms from daily muscle spasms to occasional weakness for 6 years now. I'm not worried at all that it could possibly be ALS after living with this for so long. What I am worried about is if this has been MS all along. These past couple of weeks I have felt a tingling/burning in my upper back. It is something that I've never felt before. Is this still consistent with bfcs or could it be MS? I had the EMG test done several times and it always turned out normal. What could this new symptom mean?

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    1. Langton, the symptom can be a progression of BFS to CFS. Symptoms can get worse and new symptoms can appear over time. All this being said, the only way to rule out MS is to have a Brain MRI.

      Just because symptoms increase over time it does not mean you are progressing into anything worse like MS, but your BFS or CFS can be getting worse.

      Delete
  34. Like others, I was also initially frightened about the possibility of ALS and MND.

    I was tested for Lupus, ME, Lyme disease and other less serious conditions.

    Stress seems to be a common trigger to initiate or worsen the condition and these words, and the possibility of finding out that any of them apply to you, is a very scary time made worse by the fact that tests or diagnosis is not immediate.

    I was living in the Caribbean when I first noticed the twitches in my legs and with limited medical expertise I was led to believe that after eliminating the above conditions, the only way to rule out ALS/MND was the passage of time.

    I have degeneration of the spine so it’s possible that is the route cause of the condition but symptoms first occurred during a very emotional and stressful period of my life.

    I waited four years until I began to accept that the fasciculations were benign. A long time to build up stress and learn to live with uncertainty!

    When I returned to Europe I had further tests including an EMG and can now accept the BFS diagnosis.

    Like others I found that Valium calms the twitching and exercise exacerbates it. Unfortunately I also discovered that alcohol helps. The pain and twitches subside considerably after a bottle of wine. I don’t condone this as a treatment because it has side effects, but there is no denying the temporary benefits,

    I have constant pain all over my body and feel like a hypochondriac whenever I ask for help from a family doctor. I began to believe this to be true and stopped going to the doctor out of embarrassment.

    I now live every moment of every day worrying about what I am dying from and checking my pain levels. It has taken over my life and makes work and socialising impossible.

    Until I discovered your website I didn’t realise that overall pain and fatigue is often part of BFS. I also have chronic depression so that doesn’t help.

    It all seems to be a vicious circle where I suffer, take medication or drink to ease the symptoms and my mental happiness is controlled by the good times when inebriated enough to get a break.

    I will return to my doctor now with proof that I am not making it all up and my pain, fatigue and intolerance to exercise is real.

    Thank you for taking the time to make this information available and good luck with your data research.

    I wish you and all sufferers of this chronic condition the strength and peace of mind to find a better way of living with it.

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    1. Hi Martin, thank you for sharing your harrowing story of BFS. Spine issue can certainly cause bfs symptoms. Technically, I would diagnose you with cramp fasciculation syndrome (CFS). BFS is not associated with any symptoms other than twitching. I think many people on this site are misdiagnosed because they experience pain and other types of symptoms.

      You need to find a doctor who will advocate for you.

      Delete
  35. I left a comment here not too long ago. I have been dealing with many symptoms for 6 plus years now. I have had weakness in the arms and legs, cramping, daily spasms, headaches, among many others. I was diagnosed with BCFS after undergoing many tests including 3-4 EMG tests, and an MRI on my brain. I have learned to live with all these and other new symptoms and I have been able to categorize nearly all of them under BCFS symptoms. However, what I am experiencing now seems to be something completely different. I started having some pains in my middle to upper back to go along with a tingling/numbing feeling in all of my upper back. It's hard to describe what it feels like but it feels like nerve pain. It's sensitive to the touch, I put my shirt on and I can feel it even more. This something that I have never felt before. I've tried to research it online and have read that it could be something that is pressing up against the nerves like a tumor, or a symptom of an underlying disease like MS. What I would like to know is if you could tell me all the symptoms that you know of that BFCS can cause, and if this is one of them. I get symptoms like this and I try to chalk it up to BCFS but I want to be sure that it's not something else.

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  36. Also, I have read in other comments you've made that you think you might also have BCFS, and Fibromyalgia. Does this mean that some symptoms over lap?

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    1. Langton, I will try to answer both of your posts here. I just found a good neurologist in Colorado, his name is Teerin Liewluck. According to him there are 4 main types of Peripheral Nerve Hyperexcitation syndromes. The first is BFS and people with this should only have twitches and no other type of symptoms. If you have other types of symptoms than it is more likely you have Cramp Fasciculation Syndrome, Isaac’s Syndrome, or Morvan’s Syndrome and this is their order of severity.

      One possibility causing CFS and maybe even Isaac’s or Morvan’s syndrome can be a benign tumor in the body. Teerin just released an article on this in March of 2013. He found that 25% of people with CFS have a specific antibody produced by the tumor that can cause CFS symptoms. If you have the antibody then you need to get a CT scan to find the tumor. So it is possible to have a benign tumor that is wrecking havoc on your body.

      Yes, I think symptoms overlap between syndromes and that is because many of may have been misdiagnosed in the first place. Many people have been diagnosed with BFS by their doctors because they are clueless or maybe because it is convenient even though they have other symptoms. Hence, these people have been misdiagnosed and there is this perception that BFS has a large realm of symptoms even though it does not.

      I cannot say for certain what is causing the new symptom you have, but it can be more hyperexcitation symptoms.

      Delete
    2. Thanks for your feedback, although, I would have to say that I'm much more worried now about what may be causing these symptoms. Hopefully I can find out what it is and understand better what is going on.

      Delete
    3. Langton, my purpose was not to concern you more but to be truthful. In my latest visit to Liewluck he changed my diagnosis from BFS to CFS and said I am probably somewhere between CFS and Isaac’s. He was concerned at the contraction rate of my quad muscle and ordered some genetic testing (I have not gotten the results – Mytonic Dystrophy Type 2). My test for the benign tumor came back negative. This is obviously better than ALS or MS, so I consider myself lucky. If you have CFS instead of BFS that is not a bad diagnosis because it can be worse.

      Delete
  37. I have had BFS/PNH for over 5 years now, and I live with its symptoms daily. I experience the twitching 24/7, and they are body-wide. They are mostly of the low amplitude, extremely rapid-firing variety, although I will ocassionally get what we fasiculators call 'thumpers' when flexing or contracting a limb. Those that distress me most occur in the shoulder and neck area, and this gives me the sensation of being able to 'hear' them inside my head. I have seen a number of neuros over the years and had all the usual examinations - nerve conduction, EMG, MRI - to rule out anything more serious. I have tried some of the anti-epileptic meds, such as carbamazepene, but without success. I also have exercise intolerance, and sweat profusely even after a mild workout or walk. Quite simply, it has ruined my life. Some days all I can do is put one foot in front of the other. I am resigned to my fate, and this has brought acceptance. I sometimes dream that I wake up in the morning with no twitching whatsoever. I can't see how they will come up with a cure for this in my lifetime since virtually all medical funding is directed at much more serious diseases and ailments.

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  38. Hi Aris, thank you for sharing your story. Please keep fighting the good fight. I understand your exercise intolerance as well as sweating issues, but I generally feel better if I force myself to workout. It is hard, but it is what I like to do and I am not going to let this BFS take over my life (even though it technically has). I also will not stop trying to bring more attention this disorder. We got to start somewhere, right?

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  39. Hi glad I found your blog. My Mum has been diagnosed with a rare Cancer & I've had odd twitching & cramping in odd areas of both feet & legs every 15 secs for 3 hrs each evening. I find myself pacing and stretching to stop the cramps and it's exhausting. I saw my GP yesterday & funnily enough he said he had the same thing & mentioned he thought it was BFS brought on by stress. So..what I want to know is how the hell do you stop it? I've asked for blood work as I am a coeliac and cannot tolerate gluten so I want to check my VitD, Calcium, Potassium or Magnessium levels or low or that I have a thyroid problem. I recently joined a gym in Oct as I am recovering from a prolapsed L4/L5 disc. They wanted to do a spinal fusion as they said I had degenerative disc disease.But I did physio & pilates instead. I'm now frustrated - do I keep trying to go to the gym ? Or will that make this condition worse? Luckily I just had twitching all day yesterday and stayed in and rested and did some mindfulness relaxation. I really hope this is not a lifelong condition and it can ease off. My GP said it took him months for his to ease and he's fine now. He also recommended avoiding any stimulants like coffee/ alcohol. I feel like when I get angry I have lots of energy and maybe that has nowhere to go and all my muscles and nerves are getting wired? Although that being said I've always had night cramps (normally just calf) and especially in summer with hayfever after drinking wine. Any tips? I'd like know how to manage / reduce it.

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  40. Hi Fi, it sounds like your doctor is right - stress related BFS. If you can control your stress you should be able to control your symptoms.

    You have many conditions that may result in BFS symptoms such as disc issue and coeliacs. My wife found out going gluten free was not good enough for her, she had to go dairy free as well.

    There is no cure for BFS and each person responds differently to potential remedies - diet changes, supplements, massage, medications, etc. The bottom line for you is to control your stress which may be difficult with a parent going through cancer - but you must try - Mindful relaxation seems to work for you?

    I would not quit you exercise routine unless it is making it worse. Exercise should reduce stress, but there are many people with BFS who have exercise intorlerance.

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  41. Hi,

    I have been having muscle twitching in my lower legs and feet for about 2 months. It actually started in my abdomen, and I can still feel it there, but my lower legs twitch 24/7. It was horrible at first because I thought I was dying of ALS. I have not had any muscle weakness though, and I am thinking that I have BFS. My doctor prescribed Zoloft for anxiety, and Ambien to help me sleep. The Ambien was horrible and just made things worse. She then prescribed Klonopin to take at bedtime, and that helped so much- even with the twitching during the day. I am weaning off the Klonopin now, and my twitching is back full force. I'm going back for a follow-up appointment next week, and I'm hoping she will renew the Klonopin because it really seemed to help me tremendously. Some days I didn't even feel the twitching at all. I am miserable again now that I am only taking half a Klonopin at bedtime. I think that I will be referred to neuro next... Anyway, thank you so much for your research and all of the information that you've shared here. It really helped to ease my mind!!

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  42. Hi Jill,

    Klonopin is a common drug used by BFS patients. It works for some but not for others. In fact, most people cannot find anything to remedy symptoms. It is good you found something that helps you. Seeing a Neuro is probably the best next step.

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  43. Thanks for the article, PT. I've been experiencing this for the last 8 months or so. My neurologist just recommended I take Qualaquin (Quinine) and see if that works at all. I've read some mixed reviews about how safe that is, so I'm not sure about it. I was wondering if your research has showed any correlation between the fasciculations and having "large or meaty" calves? Thanks!!

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  44. Hi Ryan, I tried quinine but it did not resolve my cramping issues. You can get it at a nutrition store.

    I do not ask people their weight, so I do not know if there is any correlation between weight and BFS. I am 5'11'' and 155 pounds and have "boney" calves and they twitch like crazy.

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  45. PT
    thank you for starting this. I am quite impressed with what you have done. I felt you were writing my story when you shared your process. It is amazing that each one of us went thru a complex battery of tests and came up empty handed. I am an internist myself and struggled to find answers and treatments then I saw total of 6 neurologists including chief of Myalgia/Myositis clinic at JHH and got the same. Cannot believe this is benign if it consumes your energy, eats you up inside out, prevents you from falling asleep and makes you feel you have aged 50 plus years overnight. As a physician, I realized that there are a lot of things we do not know about so we call them Idiopathic. Keep the search and will keep asking questions till we get somewhere. I am on a Gluten free diet for 3 weeks shooting for 2 mo to see if it makes any difference! not sure if anyone else had success with it! Also, I was an avid sushi eater. Cut down tremendously but no results so far. Anyone else can relate?

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  46. Hi Beshara, I hope to update statistics in the next few months. I am looking for a doctor to collaborate with - to help get this information published. Are you up for it? I know you are busy, but I am not even looking for credit - just want to expose BFS.

    Many people do respond well to gluten free diets but not all - I tried gluten free to no avail. Interesting question about sushi and that I do not know the answer to. But fish can have heavy metals that I do believe can cause Neuro issues.

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  47. PT
    My name is Sam. I am a 44 year old dentist in Delaware and I am also a patient of Dr Beshara Helou. Recently diagnosed with BFS by Thomas Jefferson neuromuscular specialist Dr Goran Rakocevic It has been difficult for me to wrap my mind around. The fatigue and fasciculations are maddening. I am thankful for your attention to this. Besahra told me to check you out. I get obsessed with worry about ALS although I have only perceived weakness. Do you just force yourself to work out. I ask as Rakocevic told me not too but honestly I was a cross fitter in pretty good shape now feel like if I work out I will be wired out or could make the syndrome worse. Any advice? Also I would be more than willing to join your study

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    1. Hi Sam,

      Yes, I force myself to workout daily. This past weekend I competed in an old timers wrestling tournament. Sure, I hurt but my bad pain is no worse than if I camped in front of the TV all day. Even if you have exercise intolerance I think forcing yourself to workout will at least make you feel both mentally and physically better.

      Delete
  48. It looks like we are attracting a crowd. I have to share this with all. At least, my dentist Sam and myself have a lot in common personality wise: driven, hyper, self employed, hard workers and a bit of perfectionists. Not sure how this can play a factor but it is almost a condition of excessive firing at the neuromuscular junction triggered by the brain of course(as oyu all maybe aware BFS originates in the brain not in Spinal cord or at muscle level) so wonder if it affects a certain personality type and requires behavior modification. PT I am more than happy to help with the survey. I am more of a clinician(not that great in statistical analysis) but researched this disease and related entities like MS, ALS and Fibromyalgia, Myofascial pain Syndrome, CFS etc.. for quite some time.
    Maybe it would be a good idea to talk. Can arrange for either phone or e mail. Either works with me. To add to the mix I am a migraine sufferer since age 19 but since I have this I noticed I have a totally different type of lt sided headache mostly affecting my eye! anyone else? Also, the brain fogginess bothers me a lot!!

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    1. Beshara, excellent thought on the personality types - I am the same as you and Sam.

      I am an engineer and can handle doing all the statistical analysis. I need someone who can handle the medical aspect of the writing.

      Email me at pbohan1@gmail.com if you wish to collaborate. At that time I can forward to you all of my research up to this time and hopefully in the next month or two will update the statistics of the survey.

      I have heard of migraines affecting some people with BFS.

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  49. I have also had migraines since college age. I have recently wondered if migraine activity in the brain is the cause of BFS. Seems like seizure type activity. I also get fatigue in my muscles sometimes for no reason. I do agree laying around and resting causes pain and stiffness so I think I may try lite workout. Fatigue has sometimes controlled my desire to do anything and I end up sleeping or laying around. I think this in turn leads to worry and depression. There is nothing "benign" about this disorder. I am constantly trying to look back and figure out when it started and why. I do know this for a fact: the twitching did not start till about 1 month after I had the worst migraine ever that caused my left arm to go completely numb just before the aura and headache. I think something in my brain triggered the fasciculations and I also think the paraesthesia was being experienced months prior to that. My constant worry is that the BFS will progress and turn into ALS or some other deadly condition. This is a worry I can't shake might need therapy. Haha

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    1. If there was a higher chance for BFS patients to get ALS or MS we would not be ignored by the medical community. They would be studying us.

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  50. Hi, I am pleased I have stumbled upon this site. I didn`t realise so many many people suffer with this. I have, for several months now been suffering with paresthesia, severe cramps in back of thighs, fasciculations, fatigue..the list goes on. The doctor has just diagnosed BFS, I had never heard of it so I googled it and got frightened with all things it could be so am going for blood tests tomorrow and have been referred to a Neurologist. I also have a globus sensation in my throat which I am having looked at in 2 weeks, though looking at BFS symptoms that is also apparent. I used to enjoy exercising all the time though lately I really can`t be bothered and I now know why. I am having to literally force myself. I`m not sure what bought it on, the exercise or stress, as I have had a lot to deal with this past year. It has put my mind at rest a little reading this blog though just want to get all the tests out of the way. Thankyou, will continue to follow.

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  51. Hi Tracy, thanks for sharing your story. Please keep us posted how things go with your doctor visits.

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    1. Thankyou Patrick, I will keep you posted, tried to exercise tonight and couldn`t do much, so frustrating, may be something to do with the 5 vials of blood taken yesterday or severe cramp in middle of night, who knows! little tired after working all day.

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  52. PT
    I sent you an e mail. Wanted to make sure you got it. My advice to everyone who may be labelled with BFS is to be reassured that yes it is benign in the sense it is not a universally fatal disease or progressive disease like most neurological disorders. In Neurology, there is always this agreement that "Pain is a good sign". Painless weakness is a typical ominous sign. So, may we all enjoy our painful experiences that we will not know what led to them. I know everyone including myself is looking for answers, but for now the most important thing is to keep reassuring yourself that you are in control and by controlling the anxiety that it brings(Which is enormous due to the constant brain going in circles trying to figure out what went wrong and how to fix it) you can get to a better place. I know it is hard and I am not speaking here as a physician but as a patient who went and continues to go through all these roller coaster emotions. Today happens to be a better day for me.

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    1. Hi Beshara, I did NOT receive your email. My email is pbohan1@gmail.com (I may not have written it correctly above). I look forward to hearing from you.

      And thank you for your reassuring words to everyone that reads this blog post that has nearly 25,000 views. Those words are very helpful to all, especially since you are a doctor.

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  53. Great website PT

    I have found it truly to be a saviour in my dark moments and there have been many of those in past three months. The other is AboutBFS.com, where there is a great contribution from an oncologist who shares his experience "my not so near death experince

    I am in my mid 40s. About three months ago my fasciculations began. Like yours, I think mine were triggered by strenuous exercise, as I am keen exerciser particularly running and any activity where there is a lot of stress put on legs and feet. My fasciculations were initially only in the arches of my feet and calfs. These have subsequently spread to other areas, like my thighs, arms, abdomen and neck. The latter are never a source of constant twitch like my calfs and feet. These other areas come an go at random or triggered by a possible antagonist. They may last a couple hours or up to a day.


    Like most here I feared the worst: ALS or some other MND. A simple search of the internet on fasciculations leads you straight to this. However, as you rightly point out this is kind of (or a lot) misleading. A neurologist will tell you that there are a variety of factors that can cause fasciculations. Type in headache into the internet and you probably won't get brain tumour. The problem is that fasciculations are not so common, so the information is poor. Also as you and others highlight, those that may experience fasciculations in the worst case scenario will probably not notice these symptoms until well after other serious problems have presented themselves eg muscle atrophy. Thus tripping or falling and dropping things are more likely to present first. However, those with fasciculations will no doubt convince themselves they have some form of weakness. I certainly did or was determined to test for weakness and in the first few weeks I was constantly checking whether I could walk on ball of foot or heels, stand on one leg etc etc. I probably did myself harm doing these exercises.

    However for peace of mind, other than stopping searching around the internet to self diagnose, is that you should see a neurologist to test. I myself have had nerve conduction test, EMG, MRI and also comprehensive blood testing. The latter not only test for insidious MND but also can help identify if the cause of fasciculations is due to autoimmune disease, cancer, glucose intolerance, thyroid, and various chemical imbalances.

    All my tests were normal. Thus seemingly leaving the cause of my fasciculations as unknown and thus categorised as benign fasciculation syndrome (BFS). Although I felt great relief after each test, some doubt persisted in my mind. The experience of the fasciculations is still relatively fresh and so provides me with a source of anxiety. The latter is of course a wonderful tonic for the fasciculations to lift in intensity and spread. Or as my neurologist said, anxiety is a natural antagonist. There are many more antagonists including: lack of sleep (as your body tries adjust to this abnormal state), along with strenuous activity. My neurologist can list a whole lot more.

    Like many here this experience seems to have taken some pleasure from life. The list is long: my feet often feel hot and bothered, muscles in my legs stiff, my tolerance for anything strenuous has diminished, the self doubt, the anxiety. Thus this term BFS seems some what of a misnomer. However, I am thankful though I have my life, a beautiful wife and 4 absolutely adorable kids. I have not yet had to resort to medication and hopefully I can keep it that way. There are times though I think that something may help.

    Hopefully, the source of mine is an abnormally stiff spine. So I'm going to work hard over the next few months at getting some bend in my spine and getting the muscles around my back freed up a bit.

    Keep up the good work PT I will continue to follow. Like you I have analytical mind. I like to understand and question things. I know there may be no answer for somethings, but this doesn't stop me looking.

    Best
    Tom from land of Aus.

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  54. Hi Tom,

    Thank You for sharing your story and experience. It is good for others to hear these stories of how we have ruled out something serious in nature with our bodies.

    I am interested to hear how your hard work over the next few months work out. I am of the philosophy that daily exercise is good for BFS even if it hurts us to do so. I think it is better than wasting away. I trained this past year to go into an old timers wrestling tournament. It was one of the hardest things I have ever done and I tried climbing Denali. It has been painful, but it has made me feel good about myself to fight through my symptoms. We must keep living and it sounds like you have a lot to live for. We only get one shot at life and we must make the most of the deck we are dealt. So please update us on how your hard work is going.

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    1. Thanks PT will do.

      Even though my tests are normal, the self doubt and anxiety remains high as my experience is relatively short lived. I totally relate to the stress these symptoms have caused many of your readers. This is a highly abnormal state (I wouldn’t wish this on my worst enemy) and thus it is hard not to think that something more serious is wrong. Hopefully the passage of time will help alleviate this self doubt. In my case it also helps that I have a kind and considered neurologist, one who is also suffering from BFS following spinal surgery. This I think has helped as he relates to the anxiety these symptoms can cause as I have found that it is very difficult for most people to understand exactly what one is going through.

      Delete
  55. Hi PT,
    Almost six months ago I spontaneously started to experience a feeling of weakness in the legs and to a lesser extent arms. This feeling is a sort of jelly-like feeling. It has been accompanied by fasciculations which are predominantly (but not exclusively) in the calf muscles. I have also been experiencing occasional paresthesia-like symptoms to various parts of my body. I also quite frequently experience globus symptoms (a feeling of having a lump in the throat and also on odd occasions a clicking feeling in the throat). I have had MRIs of the brain and spine, and a neurologist has performed nerve conduction studies and an EMG. I have also had just about every blood test under the sun, and the upshot seems to be that I have not got a serious disorder such as motor neuron disease or MS, for which I am eternally grateful. I am yet to see a rheumatologist and another neurologist, and a neuro-surgeon, but I think my first neurologist is simply being extra careful. It seems to me that I have benign fasciculation syndrome, but I have not mentioned this to a specialist yet, nor they to me. I am interested to know if anyone diagnosed with BFS can relate to the specific symptoms that I experience.

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  56. Hi Blogger Person,

    Yes, you Neuro is just checking into everything. I have been diagnosed for over 5 years and I still go in to check into some rare ailment. Many Neuro's do not know much about Peripheral Nerve disorders so they may not feel comfortable making a diagnosis. I

    I believe I have all the symptoms to some degree you mention. So yes, these are common symptoms for Peripheral Nerve hyperexcitation disorders such as BFS. Remember, things like ALS progress very rapidly.

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  57. Good day. Thanks for your blog. I was diagnosed with BFS about three years ago. I have been on .05 Clonezapam daily, which helps me sleep. However, lately, I have had serious fluttering at the base of my neck when I try to sleep. I've had ear fluttering at times, as well as tinnitus. I was told a couple of years ago that I have some degeneration of the disks in my neck. I often wake up with the first two fingers and thumb of my hands numb. I was wondering if anyone else has this? The neck throbbing has me quite concerned.

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    1. Hi Unknown

      Yes, my hands and arms from the elbow down fall asleep every night, several times in fact. Neck issues are also a concern most. The spine actually starts to naturally degrade at age 25.

      Delete
    2. Hi, thanks for the response. Are tinnitus and ear fluttering common? I find that if I go off clonezapam for any length of time, that they really start to bother me. Does anyone else get shakiness in their hands? I notice that both my forefingers twitch a lot, and that my arms start trembling if I put pressure on them (such as when I open a jar).

      Delete
  58. Everyone's symptoms can be unique. I have lots of issues with my hands and doing things with them. I have not heard about fluttering ears and tinnitus as being BFS symptoms, but that does not mean they are not.

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  59. The buzzing is the most insane symptom for me. Body wide haha what a trip BFS has been. Started back to the gym last week. 30mins 3 times a week on stationary bike at near full resistance. Feels good to break a sweat again. But the muscles rebel afterwards. I think you are correct Patrick that CFS is probably a more appropriate diagnosis. I get cramps and pain daily. Most symptoms are worse under stress or when at rest. When the mind is busy you seem to forget for a while. I still worry what the next 4 months will bring. I feel like my condition has leveled off but worry it will gain steam again. Pins and needles suck and it migrates to anywhere in the body. Patrick, do you get the internal buzzing feeling, sensations of pain on light touch to the skin sometimes, hot or cold sensations just curious. Thanks again.

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  60. Hi Norman, Yes I get that buzzing sensation and it is extremely annoying. The anti-seizure meds I take (Carbomazapine) seems to help with that symptom (nothing else but as you mention that is the toughest symptom to deal with). I also agree symptoms are worse at rest and that is why I tell people to remain active - so you have the right idea there. I feel it is better to have worse symptoms from that than feel symptoms and just waste away. Stay busy, it will minimize the stress.

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  61. Hi.

    I stumbled upon this website as i was looking up fasciculations on the web.
    Over the last 2 months i have developed all sorts of symptoms, the first/main symptom i noticed was fasciculations. They happen anywhere and everywhere on my body. One minute they can be in my legs, then the next on my arms, then feet, face etc etc.
    I plan to see a neurologist on the 15th of April as i have become very worried and anxious that it may be something serious.
    Other symptoms include... pins & needles/buzzing sensations, muscle pain, cramps, stiffness, Jumping when falling asleep, insomnia, tremors, and also i have noticed that my joints seem to be cracking more than normal.
    My question to you is... Could all these symptoms that i am experiencing be BFS/CFS?
    Would really appreciate if you could take the time to let me know your thoughts about this.

    Many thanks.

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    1. Also forgot to mention that i wake up sometimes with one of my arms completely asleep/numb, and i have to rub it constantly for a couple of minutes before it returns to normality.

      Delete
    2. Hi Nathan,

      I have all but 2 of those symptoms and some that you did not mention. So yes, there is a highly likelihood you can have BFS or CFS. Good luck with the neuro, and hopefully everything works out for the best. I remember how stressed out I was when I was in your shoes (waiting to see neuro and get results).

      Delete
    3. Nathan, I have exactly what you are describing. Pins/needles, numbness, twitching, tremors, sometimes pain with cramping etc. I have been diagnosed after two EMG with BFS with a CFS component. Hang in there. I am on Lyrica and it has helped but may seek beta blockers or the stuff PT is taking. Keep me posted on your final diagnosis please. I want to see if it is the same as mine.

      Delete
  62. Thank you for your reply PT

    Yes, i have been so anxious over the last few weeks. I hope the neurologist can help to calm me down and give me some reassurance next week.

    Just one more question.

    Just before i noticed all these fasciculations etc i purchased an exercise bike. I hadn't exercised for many years prior to this.
    So, is it possible (if this is BFS/CFS) that exercising may have caused this to happen?

    Many thanks once again.

    Nathan.

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  63. Nathan, it is possible there definitely seems to be link between exercise triggering and exasperating symptoms. Most people that have exercise trigger symptoms are typically hard core athletes. And once people have symptoms they can become exercise intolerant. Hard to say, but it is probable.

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    1. This comment has been removed by a blog administrator.

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  64. Hi ... first of all thanks alot for sharing us your experience .... i just wanna ask if you got any problems with eating any sawalowing issues caz i ve some attacks of dysphagia

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    1. This comment has been removed by a blog administrator.

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  65. Hi Ahmed,

    Sometimes I chock on my own phloem when I am trying to work out and I do seem to drool a lot more.

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  66. This comment has been removed by a blog administrator.

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  67. Hi Konnor, thanks for sharing your story. Swimming is probably a great sport for BFS because it is low impact on the muscles and joints. That is probably a sport I should try.

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  68. Hi PT.

    Hope you are well.

    I have been to see the neurologist. He got me to do a few simple tests/tasks whilst i was there, he also checked my reflexes etc. He said that in his opinion he had no reason to suspect that i have ALS or any other serious neurological disorder. He added that i may be suffering from BFS, or possibly CFS, but to be 100% sure he has ordered for me to have an EMG, which will be carried out in the next few weeks.
    To be honest i'm happy to have an EMG. He says he fully expects the EMG to come back clean, so once that is over and done with that should hopefully put my mind at ease and help to lower my anxiety levels.

    Two questions i forgot to ask the neurologist...
    Does a clean EMG guarantee no ALS?
    And also, are tremors a common symptom of BFS? The reason i ask is because i seem to be getting them quite frequently as of late.
    Would be happy to hear your thoughts on these two issues PT.

    Nathan.

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    Replies
    1. Hi Nathan,

      First, I would trust your Neuro. An EMG should clear you of ALS (About 99.99%). But that does not mean you cannot get ALS in the future (and not because of BFS). I would probably guess your diagnosis is closer to CFS if you have tremors. Tremors can be symptoms of Peripheral Nerve Hyperexcitation disorders. Wishing you the best in a couple of weeks.

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  69. Hi all thanks for you reply i just wanna ask if there is a relation between bfs and problems with hand writing or typewriting .... im doin it but with difficulty and some pain Is it a common syptom.... also

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    1. Ahmed, I have trouble with my hands - typing and writing from time to time. I am not sure if this is BFS or if this is carpal tunnel syndrome or both.

      Delete
  70. There is such a lot to read here so I have just one question, is there any medication you would recommend to take at night to help with the fasciculation and to stop the leg muscles going in to cramp, I am suffering a lot and until you read articles such as this one you think your the only one that has it.

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    1. Keith, there is no cure. What works for one person is unique and does not work for another. It is trial by error. For some people diet change or supplements work best. For me, the best I can find is a drug called Carbamazapine. Wish there was a simple answer, but that may explain why there is much to read, but little to gain.

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  71. I am so glad to have found this site and thread.
    What I am about to say may dismay many of you, but here goes.
    I have been suffering from what I now know is BFS since early adulthood - about 40 years now. It has "progressed" from my feet to my calves to my thighs primarily. Now I get it in my hands some.
    The worst symptom for me is the fatigue. It is not overwhelming but it slows me down, primarily mentally. I had been wondering what the fatigue was all about but the more I read the more I do think it is the BFS. It makes sense, since some muscles are always twitching, usually lightly, everywhere at one point or another. I sleep OK but can remain brain tired all or most of the day.
    These are strange creatures, these bodies we inhabit. I think the best approach is to lovingly accept it and relax. Easy to say, harder to do. But we are all in this together and that is very consoling. Blessings to you all.

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  72. Hi Daniel, thanks for sharing your story. This is good advice to everyone with BFS. And just because symptoms are getting worse, it does not mean you have gotten another disease. BFS can get worse over time.

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  73. 6 months ago I started having widespread fasiculations. I'm a 23 year old female. I believe stress and anxiety to be the cause. The first doctor I visited suggested hypnotherapy. This had helped me to relax... although I've never been able to go to a very deep state of relaxation as anxiety and being in control stops me from doing that. I had blood work done to check my autoimmunity, liver & kidney function, thyroid, calcium level, these were all fine. The only problem was I had very low vitamin D. So had a 9 week course of vitamin d3 4000ug/ day. After the course I can't say my twitches have reduced at all. I don't get much muscle pain but do suffer with a bad lower back. I find my finger bones to be "clicky". I have noticed hair loss.. again this might be stress related. I haven't bothered asking for a referral to a neurologist as my doctors just dismissed it being anything like ALS because of my age. In the UK getting a referral to a neuro is like getting blood out of a stone. The symptoms are varied from twitches all over my body and head and eyelids to vibration like feelings in my scalp and pins and needles. Also crawling sensations in my abdomen. I hope one day there will be a cure to this debilitating condition. There will always be things doctors don't know a lot about and unfortunately BFS is one of them.

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  74. Hi Kerry, thank you for sharing your story. Hopefully, as you are able to control your stress levels symptoms will at least dissipate to some degree. Neuro is an area that is mostly a mystery to all doctors. I would not be surprised if hair loss is not a symptom of BFS or Peripheral Nerve disorders. I certainly have lots more hair loss than other males in our family. I wish the best.

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  75. Hello and many thanks for having this blog.
    I'm a 43 y/o male having fasciculations for over 3-4 months now, sometimes I have them for days and sometimes they are absent for days. They are widespread but with a "hotspot" on my left proximal forearm. For the first weeks they were mostly on mu upper limbs but they have migrated to my lower limbs in special my calves. The other symptoms are continuous cramp like pain in both calves ( this is a new symptom that started about a week ago).
    EMG done and the Neurologist said it was normal and told me not to worry about ALS. NCS also normal. MRI of the neck showed a bulged disk on C5-C6 and another partially bulged on C3-C4 ( those MRI findings were a surprise for me since I don't have pain in the neck). No Babinski, no Hoffman, no weakness, no atrophy so far. CMP, Aldolase, CK, CBC, Magnesium, ANA done and all within normal limits. Next neurologist appointment will be in august.
    Although my EMG was normal, all these symptoms have me very worried that I might have ALS.
    I know that your are not a doctor but I have to ask...Does the symptoms are because of the bulged disk or do I have Benign Fas. Syndrome? Is ALS completely ruled out at this point?
    Many thanks and sorry for my english.
    All the best
    Pedro.

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  76. Hi Pedro, the EMG is the best test to check for ALS. I suspect you have something like cramp fasciculation syndrome. ALS the symptoms would be persistent. And yes, the symptoms may be caused by disc bulging in the neck because they can pressure nerves.

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  77. I couldn't resist doing a bit of googling when my wife made her usual joke about my calves twitching. I then came across your site and was interested to read other peoples experiences with this condition.

    I have had this for many years. It was first noticed when I was 10 believe it or not. I am now 57... the rippling under the skin is there 24×7. The only thing I can think of it that I have always been very physically active. I rode everywhere on my bike as a child, sometimes around 20 miles a day to various places. I played a lot of sport that involved sprinting. I continued playing football (soccer) up to the age of 45 and still play small side football now. When I mentioned it to a personal trainer, he said he sees it a sometimes at his gym and he believes it to be ‘action ready’ muscles – muscles that are primed for ‘fight or flight’.

    All I know is that I have suffered no ill effects, and I have never even considered seeing a doctor about it because it has always been there and just thought it was quite normal! I am still healthy (relatively!) for my age and continue to exercise as much as I can today. I don't suffer any of the fatigue problems described above so I can only be thankful that I have been quite lucky with it, so far at least!

    It’s simply something I live with and a constant fascination to my children!

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  78. Thanks for the comments. My youth was similar - over active. Most people with BFS have similar symptoms as you - twitching but no other symptoms. You may also have a very rare disorder called Rippling Muscle Disease (RMD). It is probably more common than believed but most people go through life without any ill effects so it is not reported. RMD is genetic and there is an expensive blood test for it.

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  79. Hi! I started having right upper eyelid twitching in Jan. or Feb. of this year. That was the only symptom until mid May when I started having all over body twitching in addition to the eyelid. Then the muscle stiffness started- mainly in the quads and calves and occasionally the arms. I am a personal trainer and an avid exerciser. I went to my neuro who did bloodwork, and MRI and EMG which all came back normal. He said I had no weakness, etc, and that he thought I had CFS. I had resigned myself to that fact and have been learning to live with it. Klonopin helps somewhat with the twitching. I am also on gabapentin which I'm not sure does a whole lot. My question is, up until today, my twitching has only occurred when my muscles have been at rest. However, today, my left tricep started twitching during the middle of a tricep exercise. I had also done biceps today as well, and some triceps yesterday. Do I have reason to worry? I have been reading that its serious if the twitching happens during movement. Now, I am freaked out again. Please advise! Thanks!

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  80. Hi Julie, I am no doctor or expert on BFS (nobody is), but I can talk from my experiences. Personally, I believe my muscles twitch when I am moving, but it is harder to feel the symptom because most twitches are of the small muscle fiber variety. I know when I get more violent twitches they continue when I move to other positions. I also have a muscle contraction issue that happens when I move. I also think it is common to get fasciculations in areas that are being stressed physically (whether you have BFS or not). So there can be explanations that are benign to explain your twitches when in movement. It does not necessarily mean something more serious. If you are stressed out by this you should seek reassurance with your Neurologist. Stress will make symptoms worse. So try to relax and rest the stressed area and see if it improves.

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    1. Thanks, PT for your quick reply! I am trying to relax although all the drama and stress on the home front is definitely not helping my symptoms. I kind of thought with all the tricep and bicep exercises that I've done yesterday and today, just really might of overstressed it and caused the twitching during movement. I will try not to worry about it (easier said than done!), and I will contact my neuro on Monday. Thanks so much- it's amazing how reassurance can make one a little calmer!

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  81. Dude you need to stop acting like you're a doctor on here...anyone on here needs to see a doctor and stop taking advice from a hypochondriac...MNDs present with weakness, not muscle twitches...if you have weakness or twitches, see your doctor, they aren't hypochondriacs like this guy obviously is, he has spent a year on here worrying about a benign disease...

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    1. Hi Andy, I do appreciate your comments and will not remove them because everyone is entitled to their opinion. And I think it is important all opinions are heard. I do agree with you that everyone should consult a doctor; I believe that is the only way to truly find what is going on, but I doubt patients will get the answers they deserve.
      All that being said, my opinions on this website are based on my symptoms and what the statistical analysis of over 600 people in my survey say.
      You obviously did not read the article and do not suffer from this disorder because you would see it is not benign. Several doctors with BFS have posted on my site thanking me for my help.
      I find it odd that you do not like me handing out my opinion based on mathematical models and correlation, but you have no problem handing out your own opinion of me with no facts or information. That is hypocritical! I am no hypochondriac, but I do not have to prove that to you. Would a 51 year hypochondriac compete in wrestling and go through high school practices? Would a hypochondriac compete in the senior games this year? Today, I rode my bike 40 miles round trip to the top of Cottonwood Pass (Over 12,000 feet high). I am in pain and feel like shit, but I do not miss work. I am both mentally and physically tougher than 99% of the people in this world. You should get your facts straight before attacking a person. I have obviously drawn some negative conclusions about you and your personality, but I will keep them to myself because other than these few sentences I know very little about you.
      I did not choose to be a spokesperson for BFS, but was only trying to better define the disorder using my math and engineering background. Doctors know little about BFS. In fact, I was misdiagnosed by 3 neurologists and do not have BFS. These same neurologists were unable to also identify that my muscles not only have a firing issue, but they also have a contraction issue. This should not happen. I paid these guys thousands of dollars each only to be misled. So you do not even know what is ailing me, yet you have defined me. That is unfair, and that is very sad.

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  82. Hi Andy

    A pretty unfair attack on a highly decent individual who has done nothing but be helpful to others. I am particularly thankful that there is such a person like Patrick as he has been extremely helpful to me in my dark times.

    You obviously have taken no time to read many of the comments here. PT would always get an individual to seek medical advice if they are concerned about their symptoms

    BFS for many suffers is far from benign. Although it may not kill you, in some case it can reduce the quality of life considerably.

    Do not judge others unless you have walked in their shoes.

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  83. This comment has been removed by the author.

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  84. Hello PT, My name is mike and I began twitching in May of this year, noticing it after a workout the next day my thighs just going crazy. I had an exposure to some peanut candy that most likely was bitten by a mouse so I thought the worst and had Lyme, Rabies tests done which both came back negative. Then I read about ALS, and Isac Syndrome, etc.. Scared me enough to get and EMG/NCS study which both were passed with flying colors and doctor said it wasn't ALS (no facs seen), though I can visually see my legs, feet twitch like crazy. I had the front left shin turn 'hot' and a rubber band feeling (everybody sais left side .. real weird). That finally went away about 4 days ago, but now I'm dealing with sting like pains (after mild jogging yesterday) and random muscle jerks in various body parts (shoulders, legs mostly, some forarm muscles) I have ran blood tests all coming back with normal levels, and doctor refused my idea of checking for candida (she said its to broadly defined to be of use) but after failing a spit test 2 weeks ago and always dealing with possible candida issues (itchy scalp, butt, dandruff, sugar cravings) I decided it was worth it to attack that front and started on cyclical raw garlic, cyclical seaweed (for iodine), invested in cocunut milk, camomile, probiotics, etc.. 2 weeks into diet, no change yet. I also have been randomly using Tamarind with the idea it could be symptoms of floride toxicity, which i turn leaches calcium and combined with possible leaky gut could be depriving me of magnesium/calcium.. just a theory, Anyway, thanks for your effort. I am a mechanical designer and can appreciate the congnitive way you are logically going about this. Dont give up brother, we all are dealing with this together. Thank god I still sleep pretty sound still, only awakened with 'jerks' mabey a few times so far.

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    1. Thank you for sharing your story. Keep trying the diet change. My wife cut out gluten, dairy, and nuts and it did wonders for her. I tried, but it did not help me at all. But it is one of the easiest lifestyle changes we can try.

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  85. Twitching 4 weeks everywhere but constant in feet and legs. Can see in feet most others I only feel. First husband passed of ALS 8 yrs ago. Nothing brought on symptoms specifically except ice bucket challenges everywhere! Physical appt today. Scared

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    1. Try to stay positive. Our thoughts and prayers are with you. Remember, CFS / BFS symptoms are most common in the legs and feet. This is a terrible experience to go through so hopefully it is resolved fairly quickly.

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  86. I was hoping since the twitches started everywhere at the same time along with no weakness or muscle wasting noticed, I'd have less chance of this being a fatal disease.

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    1. The bloodwork did not show anything that would cause this

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  87. Do you have any further comment on my above posting?

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  88. Bloodwork always comes back normal for anyone with BFS or CFS.

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  89. Thanks. I'm waiting for a few more results but I know that's not it. Neuro appts begin next week. Thanks for your input and all the info.

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  90. Hello everyone ,im 33 years old and have this twiches about 1 year they apeared from no were in june 2013 ,frist was in the left eye and eyelid and stayd there about 1 week after that stoped and after 1 day or two days apear in my big finger at left hand and stayd there about one week ,after that the tichw go and stoped but surprise after a half of mont the twich came up again somewere behind my left knee and twich there for several days like motor day by day ,after in one day when i was at work and from no reson the twiches apear all over my body ,right hand muscles and fingers ,also left hand and fingers tiwches ,legs ,butts ,everywere ,i panic because they dont stop and they are present till this day but moderate from what they was in frist time when they apear.
    I searched a lot and now im scared to the death because ALS or Lyme ,i made this year EMG in march 2014 and came back clean no problems ,i made MRI no demineralizations just only a little pineal lesion 1mm ,doctor sayd can be there from when i was born and to make another MRI after 6 months or 1 one year to see if that pineal lesion grows ,because if he grows is not gonna be better , i know it's scared me a lot and sometimes i make all kind of worry ,enter in panic ....well i hope that lesion dont grow.
    I asked if this is the cause of my muscle twiching non stop day by day and says : ''no this is not the cause from your muscle twiching ,there are other unkown problem like BFS '' and i asked about ALS because i read is a sign of ALS and sayd make a 2th EMG to clear more this ,now in my opinion is BFS but go and make EMG in order to see if some problem apeared in this time.
    Now i have the twiches in my left calf day by day 24 and also in my right calf ,fingers sometimes not always ,right eyelid left up eyelid sometimes ,etc all over my body ,jumps to a muscle to another some times stays in one place from 1 day twich there but not all time with pauses , then go in other muscles ....this is anoying like hell make my life nightmare , but they are moderate not like frist time when get hard twices all over ,some days are better and go very lower some days drive me nuts and scares me ,i cant get to sleep sometimes because this calf twices ,or they are in hand and after that some were my head etc ,make me think i have other dangerous problems ,im scared i get a complex B vitamins , and d3 ,folic acid and calcium ,also some iron vitamins ,dont help but keeps me ok .
    I have also some very lower muscle payn but sometimes ,i dont have that muscle weeaknes just the that felling about ALS wich scares me everyday.
    Now i will go to make the 2 th EMG to see if some problems apear and in 2015 made another MRI ,hope if BFS and maybe someday they will go because they are driving us nutss and make life a hell.
    I will be back with updates .

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  91. Btw i forgot to say than i made Lyme Borelia test and it's negative ,because i thinked it's lyme ,i will repeat the test ,because i hear some test dont show up positive from frist one .
    I dont remeber to be bit by a tik never 100% but if i read some ppl they dont remeber that ,hope all good to us ,and i hope my problems are BFS with the GOOD help ..

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  92. Hi Mein,

    THanks for sharing your story. We are all pulling for you and also hope it is BFS. You are definitely going through the right set of trial and error tests. Please keep us posted.

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  93. Hi,

    An update from me. It has been almost 2 years since my twitching started. I believe it is a bit better than it was 6 months ago. At least my eye stopped twitching - that one was super annoying.

    Anyway, I had 3 different neuros tell me that it was nothing to worry about and that it was BFS. After 1.5 years I was determined to get an EMG so I booked it. The first needle they put in there was a "strong wave" and the doctor said "that could be something". The rest of the EMG was normal and he said it was "clean" at the end. I asked him about the "strong wave" and he said one in isolation isn't a concern. Still bothers me that it wasn't 100% normal but I guess I need to accept the result. He says he is the ALS expert for Calgary so he probably knows what he is talking about.

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    1. Hi Craig, most people do not have a 100% clean EMG. For me, they could not find the return signal in my feet.

      ALS moves very rapidly. The fact you have had BFS symptoms for several years without atrophy is very telling that you do not have ALS. Trust your doctor - he has probably diagnosed hundreds of ALS cases over the years using an EMG - so he knows what he is doing.

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  94. I am a 30 year old mother of two. 6 months ago, about 3 months after the birth of my 2nd child, and right after I returned to work, I started to notice a burning/tingling sensation on the tip of my tongue. I happened to be due for my dental check up and mentioned it to my dentist. He thought it was Burning tongue/mouth syndrome brought on by stress. I did have a lot of stressors in my life...mother of 2, back to work full time, not sleeping, breasfeeding...the list goes on.
    Despite the benign diagnosis I was constantly worried about it....then 4 months ago my muscles started twitching. I first noticed them in my legs, but now they twitch anywhere from head to toe, even my tongue occasionally. My PCP sent a bunch of labs, including Lyme titer, and everything came back normal except for VD was a little low, so I have been taking supplements for that as well as a post natal vitamin and a B complex. I also saw a neurologist with 30 years experience who performed an EMG (even on my tongue!) with Nerve conduction...he said it was "squeaky clean" and my exam was normal. He also ordered an MRI of the brain and that was normal. He told me to stop worrying about ALS. He said anything neuromuscular had been ruled out. I will admit that his reassurance did seem to make my symptoms a little better...but then I have times when they come back full force. At first I did not experience twitching in my toes and now I do. I also at times get very mild muscle cramps, mostly in my right lower leg and occasionally the arches of my feet. Because I continued to worry after my EMG, I went back to the neurologist and he once again reassured me that I do not have ALS...but the fear is still overwhelming. I spend a lot of my time worrying that my girls will not have a mother. I guess I worry because of the burning tongue, the occasional tongue twitches, the muscle twitches that are not always visible, and often very light in nature as well as the occasional muscle cramps. I do not have any muscle wasting or weakness, and I have even started jogging and working out again. I am functioning just fine...but the fear of ALS is taking over! I even at times feel as though my speech is affected. I feel like sometimes I have trouble with "S" but it is not all of the time. I have read that this perception of speech and even swallowing difficulty can be a sign of anxiety.
    1. Do you think I can be 100% confident that the neurologist with 30 years experience is right that I do not have ALS?
    2. Does the clean EMG completely rule it out?
    3. In your experience with your research and with talking with other BFS sufferers, do my symptoms sound similar to those of others with BFS?
    4. Is it possible that all of this is a result of anxiety? Anxiety after returning to work leading to my tongue symptoms, which lead to more anxiety, which lead to muscle witching, which lead to more anxiety, which lead to tongue twitching??
    I know I sound completely crazy. I have never had excessive anxiety or worry over anything until all of this started :(

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    1. Hello, I have had all your symptoms, I've has half my tongue go numb, I know how scary this is! I've had BFS for 3 years and I'm still here. I was positive I had ALS, it made me have a nervous breakdown. I was already stressed out before the symptoms started. I should imagine you are suffering from emotional exhaustion, it really messes with you. Please try to let yourself believe you are ok, and invest as little time as possible into thinking about it. Not completely, bottling up isn't good and most importantly DON'T GOOGLE! I hope you feel better about it soon. It's annoying but don't let it own you. You can laugh and twitch/fizz/headachey at the same time...I promise.

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  95. Hi K,
    Thank you for sharing your story, I know that is difficult to do. Let me try to address your questions first.

    1. I would listen to your doctor. He has probably diagnosed dozens of ALS patients. Obviously, there is never 100% certainty, but I would say the chances of him being right are above 98%.
    2. A clean EMG would rule out ALS. This does not mean you or I will not develop ALS in the future, but like I said I would be willing to bet with over 98% certainty you do not have ALS at this time. Keep in mind ALS moves rapidly and seems to affect men more so than women.
    3 Nerves control nearly everything in your body. Hence, most symptoms do not surprise me anymore. When your nerves go haywire than expect to have some weird symptoms.
    4. Stress and anxiety are killers. They can cause heart attacks so yes, anxiety will exasperate symptoms. Most people in the survey believe stress has triggered and or exasperated symptoms. The good news is, is that if you can figure out how to control stress then you can control your symptoms. Easier said then done, but that is the key.

    I do not think you are crazy and please do not hesitate to email me at pbohan1@gmail.com if you have more questions.

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  96. Hi to everyone,my name is Paul.i have suffered with BSF for 13 + years now and hope by passing on some of my experiences I might be able to help and add to the collection of data on this subject.My problems began with a deep ache in both my lower legs,then I developed a twitch in my left calf muscle which would not stop,then my right calf muscle began to twitch,these twitches spread into my feet and i had a steady progression of symptoms:a feeling of pressure in my head and ears,prickling in my feet and toes,burning on the rim of my ears,fatigue,body cannot take any exercise as it would cause too much pain in my muscles,fasiculations progressing into left side of face both arms and upper legs,muscle cramps and pains unbearable at times.From the early onset of the first fasiculations my neurologist performed numerous tests,brain scan,many blood tests and all the usual tests to eliminate motor neurone disease,parkinson's,issacs syndrome, but thankfully all tests came back negative.I was told by my neuro that it was more of an inconvenience than anything serious.The good part of this story is due to persistence when persuading docs to try different medications and adjusting doses i am now controlling the pains and symptoms enough lead a reasonably normal life.I do find things which worsen my condition which are exercise,stress,alcohol,heavily spiced food and dehydration.The medications I take are,Gabapetin,Nortriptyline and Clonazepam.
    I hope these notes can help others with their concerns and prove that if you persist you can find ways to control this very difficult and socially debilitating health condition.
    Best wishes,Paul Smith,Hessle,East Yorkshire.

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    1. Thanks for sharing Paul. It is helpful to all of us.

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  97. Dear PT Bohan,

    I am a doctor who has spent the past 48hours panicking about a persistent twitch in my right thumb, and retrospectively, a possibly associated resting tremor in the right hand that disappears on movement. It is very early days for me, and I am definitely not eligible for a referral to neurology based on my symptoms. But I would like to express my gratitude for your calming manner with which you respond to the questions, and for having a site that does not freak me out further.

    Thank you. You have no idea how reassuring the information on this site has been.

    Best wishes. (ignore that nasty comment a few months back, he's just a mean mean person)

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    1. Thank you. Please do not hesitate to write me if you have any questions or just need to talk. I will never forget how hard those first days and months could be until a clean diagnosis came back. Hopefully, you just have some high anxiety at this time and it will just go away.

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  98. Hi, I'm Lottie, I've had BFS for over 3 years now. I still have the devil on my shoulder that makes me panic that it's something progressive or more serious. It's such a strange thing to get your head round. My muscle twitches started while I was having a bit of a bad time mentally, was pretty fed up and skint, my boyfriend had moved in with me and I have 2 kids from a previous relationship, it was all a bit of a stressful time, felt exhausted, then the twitches began, this then led to me having severe anxiety and my Gp's weren't helping by making me feel like a hypochondriac and trying to give me anti depressants. I was having massive heart palpitations because I didn't know what was going on, I seriously thought I was dying! The more I worried the worse they got, the more I worried. I was a mess! Finally a found a nice gp that had heard of BFS and then i felt a bit better, she then put me on amitryptolin (wrong spelling) which was pretty good at knocking me out so I actually slept, I then finally got to see a neuro had tests all came back fine. Was a bit annoyed by not getting an MRI but I thought I can't let this rule my life.
    I don't take any drugs anymore, if you are getting stress triggered related BFS then please try to not think about it, make it your lifes aim to not think about it, it will seriously improve. I have managed to control the panic and annoyance over it. Don't get me wrong I wish I didn't have it, I'm quite a stressy person so I just think whatever, I'm a bit special compared to everyone else. I think emotional people are more prone to it. I've had a really bad day today as everyone does, but I'm twitching all over my body at random intervals, fizzy feet, tired, headache, tremor/jerky neck...but it could always be worse. I need to get back into meditation( an afternoon flop as I'd prefer to call it)
    I know how scary this is and it made me a mess for a long time, I strongly recommend sticking your fingers up to BFS and show it whose boss and get back to life as it's the best medicine. Try and stay off the coffee, I haven't managed to, but I like coffee more than BFS, so suffer a few extra twitches. As long as you know it's nothing to worry about the less you let it take over your mind. The more you think about the less symptoms. I've managed to go days without noticing maybe a week or two. It's a funny thing, when symptoms stop you don't notice, just get a bit gutted when they return.
    Sorry I've waffled.....needed to get it off my chest and hope I can help someone that is really worried like I was. There's not enough positives for Googlers to cling to.
    Good Luck everyone!

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    1. Hi Lottie, thank you for sharing your story and advice to deal with BFS. I think these are strong words that all of us BFS sufferers should heed. Life is short, so we need to live each day to its fullest. I am glad that you have been able to move on and block BFS out of your thoughts.

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  99. Thank you for such a quick response. I think this is one of the most useful sights I've come across, I wish I found this 3 years ago. I haven't totally conquered the BFS blues but I don't panic about it like I did. It is bit of a big deal, a bit unfair that we aren't allowed a bit of sympathy. It's nice to know there's other sufferers out there that know what I've been through/going through.
    A nice place for reassurance not scaremongering.
    Thanks lots

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  102. How to be sure not having Parkinson as ENMG or MRI do ot show it?

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    1. Hi Hanna, Parkinson's is not easy to diagnose in many cases. You may want to trust a good neuro to make that determination. Parkinson's is definitely debilitating and gets worse over time and that is not necessarily the case with BFS / CFS. Most cases of BFS and CFS are benign - not Parkinson's. Parkinson's generally inflicts older people (average age is about 53 for diagnosis). BFS and CFS average age seems to be younger. No easy answer to this question Hanna, but if symptoms intensify then it is probably time to check back with a doctor.

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    2. Thank you for your answer. I have muscle twitching and also some tremor, but only during stress / activity (not when I´m resting or relaxing). I have had both ENMG and MRI (both clean), but still nervous about Parkinson as don't know how to rule it out to be able to relax with these symptoms.

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    3. Hi Hanna, I am not a doctor but this sounds like BFS to me. I would imagine that Parkinson's symptoms would be a 24/7/365 thing and not just at times of stress and activity. Try to relax to reduce those symptoms if you can.

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  103. Hello my name is Kim, and I found your article to be very inspiring. About 8 months ago I woke up with tingling in my right leg this progressed to tingling in every extremity for about 2 weeks. Then the fasciculations began. I have had hyperreflexia for years in my legs so of course my primary care provider was concerned about MS. I was sent to 2 neurologists who concluded there was nothing wrong with me (after MRI, EMG, EEG). I was so frustrated how any medical provider considers twitching almost constantly (sometimes even my tongue twitches) and hyperrefelxia nothing. The last neurologist did however refer me to a rheumatologist. After another wide range of tests I was told I have fibromyalgia. Don’t really know if I agree, but they did put my on Lyrica 75mg twice a day and finally I have some relief from the constant twitching and tingling. I don’t know but maybe this medication would help others struggling with BFS.

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    1. Hi Kim, thanks for sharing. Fibro is a tough thing to diagnose, basically if nothing else comes back positive they call it Fibro. I tried Lyrica and it did not work that great for me. I have since moved to Carbomazapine and it has helped some. Both drugs are similar in that they are anti-seizure meds. I know several people that have also found relief with Lyrica and or some type of anti-seizure medication such as gabapentin. I am super happy you found something that has worked for you. Many people try dozens of things and find little or no relief. Thanks again, and please do share if something else comes up.

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  104. Hi, after a bad gastro bout in early May I started getting bad foot cramping and fasciculations in legs. This started on day two of awful diarhea actually. The fasciculations have not let up, feet and calfs are 24X7. Things improved over June and now July with fewer fasciculations that I can feel, and less cramping at night. I can go a few notes with no valium or Flexeril and no cramps happen. But when I do cramp at night lack of sleep and anxiety is through the roof for fear of what this can become, like worse BCFS. Had EMG and MRI, clean except EMG confirm fascic and doctor things BCFS. I know you can't answer this for me but how do you just accept this condition? I am so depressed it's awful. It is not the twitching that bothers me, that I can deal with because it isn't painful. It is the cramping at night, lack of sleep causes anxiety, frustration and depression to go through the roof.

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    1. Hi Neal. Thanks for sharing and I have lots of empathy for what you are going through. It is not easy. The small fiber twitching is certainly much easier to handle than the other symptoms. Acceptance is a hard thing, but maybe just dealing with things over the years makes it easier. Lack of sleep is a killer and I have been there too. Have any doctors made any recommendations for you about dealing with cramping and pain? For some people quinine helps. I take carbamazepine and it helps me some. Maybe you start to try some things on a trial basis to find at least some relief where it is bearable (hopefully it goes away, but that may not be the case). Lack of sleep will definitely cause some depression - so the key is to find a doctor that will advocate for you and work with you until you get some relief.

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  105. Thanks so much for the quick reply! How long did it take you from first realizing what you had to just being able to get on with life? I'm 2 months in, maybe I'm setting expectations to high about adapting. It's tough at 40 suddenly going from Crossfit to not even walking a .5 mile without suffering cramps at night. I've seen my PCP tons of times and had an EMG a few weeks back where the doc confirmed this is nothing bad but mentioned BCFS. I have a neuro consult on 7/20. Right now I'm taking Valium and Flexeril (not at same time) at night as I need them. My PCP is great but knows nothing about this so not really much help. I live in NC and the neuro is in Raleigh so hoping she is both aware of the condition and caring to help me manage it. Wish I lived where you do to see your doc! With all your survey research did you show that virus was a sudden trigger? Like I was fine one day, and day 2 boom it hit. So many blogs on BFS.org and your story talk about this developing slowly. That was not the case for me so wondering how that compares to others.

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    1. Yes, virus can be a trigger for over 10% of the people. Wow, from crossfit to struggling to do a walk, that is hard. Many things I did athletically in the past I can no longer do either - running, hiking, rock climbing, wrestling etc. Some for safety reasons - paresthesia in the hands and climbing do not mix. I have tried to evolve and found that I can cycle with less pain. I am now competing after a year in the sport and doing fairly well. You may have to do the same. If your neuro does not help you, keep trying until you find one that does. That is what I did. My BFS has progressed over time. In fact, I think I lived years with it and did not know it. I remember initially thinking something was wrong, but when I kept going on I figured maybe everyone goes through this (I was wrong), but I accepted out of ignorance (and symptoms were not as bad). I think getting all those symptoms all at once makes it hard to accept - that is why I hope you find a doc that will help you. Let me know how things go.

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  106. Thank you I really appreciate the support and all the information you have posted! Cheers to hoping they find a cure or acceptable treatment for this thing soon.

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  108. PT Bohan,

    Let me start off by saying that I appreciate your blog not being like one of those other sites that seem to have died years ago. When I began perusing the comments I expected you to have abandoned replying a couple of years ago. Good to see you're still dedicated to helping people.

    My symptoms started about 4 months ago. I had noticed little twitches in my body prior, but never thought anything of it. I got a twitch in my left thenar that caused my entire thumb to jolt. It persisted for about two weeks before I decided to visit my Dr. The twitch was also accompanied by a mild tremor in my left hand. Having an aunt who passed with ALS, obviously that was a concern. My Dr. thought the twitching and tremor was due to stress, but just to make sure he put me on Propranolol to see if it helped with the tremors. I was supposed to have a follow up in a month, but had to reschedule my appointment. Unfortunately my physician went on vacation. As I started to get different symptoms, probably due to anxiety and stress, I visited his NP while he was on vacation which was probably the worst mistake of my life. She didn't know what to look for. She did strength tests with me, checked my reflexes, but kept exiting the exam room to ask someone else what other tests she should do. On her last return she had me show her my tongue and responded with, "oh ok". She told me that it's hard to keep the tongue from twitching if you have twitches. I apparently had a twitch in my tongue, something I was not aware of. She recommends I see a neurologist and also get an MRI. On the referral sheet for the neurologist it says, "coarse tremors, family history of ALS, ASAP". Very comforting. I get my MRI the next week but don't here back from anyone for another full week and a half. Being my dr. Was still on vacation, I had to call myself to get the results for my MRI, which came back as clean but with chronic sinusitis. But that didn't stop my anxiety from going into overdrive. A laundry list of new symptoms popped up. Waking tremors, insomnia, parts of my face, hands and feet would go numb, back and shoulder pain, weakness in hands, finger dexterity issues, joints popping and grinding. I finally got to see the neurologist who I'm not certain is the best in his field, but it's something. After a quick 5-10 minute clinical and an a not so pleasant EMG, he says I shouldn't worry about ALS, but I do have minor CT and ulnar neuropathy. And that the fasciculations all over my body are benign.

    All that was good and I was feeling pretty good with most of the symptoms subsiding except for the fasciculations and fatigue. Until I started noticing my muscles seem to be turning to flab all over my body and my exercise intolerance is unbelievable. At 37 years old I can't carry bags of groceries from the car without having forearm cramps and pain for two days following. The cramping is new and the intolerance to this level is new. I feel pretty good other than how I feel after exerting just a little bit of extra energy. I went back to the doctor last week and he said muscle weakness can be a side effect of Propranolol. He wants to take me off of it for a month and see how my body responds. If the intolerance persists he wants me to go back to the neurologist, for what I'm not sure. I don't know if it's atrophy, but it seems I'm losing muscle and the inability to do anything without paying for it for days after is disconcerting. This last visit was the first time my doctor said the words MS or NMD. He said it just takes time to figure this stuff out. All my symptoms line up with BFS/CFS, but without any diagnosis I'll always be terrified in the back of my mind.

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    1. Hi Dustin,

      I understand these can be difficult times. But a clean brain MRI should clear you of having MS and a clean EMG should clear you of having ALS. Diagnosis of something definitive in the world of neurology is difficult - doctors really know very little about it. Many of the symptoms you report are definitely possible for CFS - numbness, cramping, fatigue, weakness, and consequently exercise intolerance. Weakness is not the same as atrophy, and of course muscle mass can decline fairly quickly if we do not continue the same exercise schedule. The only thing we can control is our stress level and if you can do that, then you will better control your symptoms. I know, easier said than done. Things like lack of sleep will wreak havoc on your body. Exercise hurts my body and I just try to evolve and find exercises that are more tolerable - like cycling and swimming. Your life may change, but it can be managed for most of CFS people if we are willing to evolve. It sucks, but we have to try to make it less sucky. And each person is unique and must advocate for their own health and wellbeing.

      No doctor should be suggesting any kind of disease or disorder without any facts or data. He is wrong to be making assumptions and suggesting you have MS is not right - especially if you have a clean brain MRI. I would ignore him and listen to your neurologist who has the data. I would also suggest going to a different neurologist to get a second opinion. Hopefully, having two neuros rule out MS and ALS will give you a little more confidence to move on with life.

      Stay positive and I will keep you in my thoughts and prayers.

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    2. Thank you for the quick response. I do take solace in a clean EMG and MRI. If I do go back for another I was planning on a change in neuros. I have had quite a bit of my symptoms that seemed backed by anxiety go away. I don't have much of the big symptoms of MS or any significant signs of Weakness in limbs as seen in ALS. My biggest concern at this point is the change in my body. Not necessarily in mass, rather just my muscle seemingly just dropping. It just seems now any muscle I flex I can just push in and around with ease and the tone is gone. That's my concern at this point, and I haven't read anywhere where that is something anyone else has seen. I just try to put it in the back of my mind.

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    3. I really think if you do not use your muscles due to exercise intolerance you will lose muscle mass quickly. I just went 9 days without doing any bench pressing and my output was down over 25%, and yes I can tell the difference.

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    4. I am a 57 year old former medical doctor my symptoms became so severe that I was forced to retire as I could no longer concentrate yet I was refused medical retirement as I had no label.bfs is not a commonly used label in the UK.my message is not to lose heart because though I was profoundly depressed I have learned to live with my symptoms and the general lack of understanding that exists.i do think it needs a better label blogs like this are helpful best wishes to everyone similArly afflicted

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  109. Thanks for sharing Alan. I have been trying to get the medical professionals that contact me through this blog or email to meet via video conferences to discuss what can be done to promote more exposure about BFS and study it further. If you are interested let me know. So far, very few seem interested - if any.

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  112. Hello! its nice to read all this comments, not because of the illness itself... it just gives me some peace of mind. First of all, excuse my english, i live in Venezuela and english is not my mother language.
    Its been almost 8 years since the tweetching started, i was really scared, im kind of a hypochondriac, and i thought the worst... Parkinson, ALS, MS... u name it, i thought i had it.
    It began in my fingers, but with time it went to my calfs, ribs, legs, arms and still in my fingers sometimes. I dont feel any pain, sometimes when i try to move my fingers (slow movements), there's some stiffness going on, shaking... i dont know how to call it. I can do everyday/normal activities, it hasnt affected me in that way, and when i dont think about the tweetching, the symptoms are not so obvious or intense.

    Its been 8 years, im guessing that if its parkinsons disease, ALS or MS, i should be in a really bad shape, but not at all.. i can run, move my arms and legs with no problem, i dont fall or lose my balance... its all about the tweetching, but i've never had an EMG or MRI, i'm too scared.. I should probably go either way, just to find that peace that i so much need.

    What do you think Mr. Bohan? Am i a BFS candidate, or should i be (even more) worried?

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    1. Hi Giancarlo,

      Your English is perfect. So I am not a doctor, but I believe your assessment is correct. After 8 years it is highly unlikely you have MS, ALS, or Parkinson's. These diseases generally move rapidly and are crippling.

      It is definitely a scary experience to go to a neurologist and to get an EMG and MRI. However, clean results may give you some peace of mind and stop you from worrying. If you stop worrying then maybe you can mitigate your symptoms. I definitely think it is worth going to a specialists and getting the appropriate tests. In your case there is a high probability the results will be negative. If you can live a normal life (low stress) without knowing then okay, but if not, I strongly suggest seeing the neurologist. It sounds like you are coping quite fine. I also suggest to quit surfing the web if you have hypochondriac tendencies. The web is full of bad news.

      Things like MS, ALS, and Parkinson's have very low probabilities - like 1 in 10,000. Parkinson's is much higher about 1 in 1,000, but that is because a lot of older people get it. Our dopamine levels normally decrease with age. And since people are living longer Parkinson's disease cases are going up. It is much more likely to have some type of peripheral nerve disorder then these other diseases.

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