tag:blogger.com,1999:blog-6889986006783300070.post8327058579982037626..comments2023-10-19T05:40:40.156-07:00Comments on The Theory of Mediocrity: Benign Fasciculation Syndrome-BFS (Part IV)PT Bohanhttp://www.blogger.com/profile/10101195261695989996noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-6889986006783300070.post-74613612646950874462018-11-28T07:33:07.647-08:002018-11-28T07:33:07.647-08:00Hi Patrick,
My husband was diagnosed 6 years ago a...Hi Patrick,<br />My husband was diagnosed 6 years ago and after 6 months went into a remission. A few months ago symptoms began to appear, he had done a Ragnar (24 hour relay race) a month before. He is very active but now this has set him back. He is on medications and seeing a slow improvement, however when he feels good he tries to do things around the house but then very stiff the next few days. He is anxious to get back exercising. He is in physical therapy 3 times per week for soft massages but is still weak. It gives him hope that you are still cycling and swimming. When you say it is getting worse, are you still on medications? Do you have more stiffness than cramping? Very difficult to watch ass we have three young active children.Anonymoushttps://www.blogger.com/profile/02172700458364396422noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-27119252194990466942017-09-04T15:08:38.234-07:002017-09-04T15:08:38.234-07:00No, I am getting progressively worse (but only sli...No, I am getting progressively worse (but only slightly) over time. I am trying less to dwell about BFS so less writing. <br /><br />High CPK seems to be common for BFS. I have high CPK (600 - 700) but I exercise intensely since I still compete in cycling. If muscles do not relax, it seems CPK can be elevated. <br /><br />Not finding any significant correlation was a bummer, but a statistical analysis of the disorder was probably needed. <br /><br />No need to feel bad about being a MD and not knowing about BFS. Anyone who claims to understand BFS is only pretending. I have had conversations with dozens of confused doctors. I saw 5 neurologists before finding one that had a basic understanding of the disorder. I do not expect doctors to understand everything medical, but I do not like it when they give you false information. It sounds like you have been given some false information. I was told I probably would not be able to exercise intensely anymore. It has been 8 years and I have been getting better even with more intense symptoms. But it is fair to say that many things I cannot do anymore like be a wrestling coach or rock climb. The paresthesia in the hands and feet make this really hard. <br /><br />Do not get surgery unless you absolutely need it and have no other options. I am sure you know this. PT Bohanhttps://www.blogger.com/profile/10101195261695989996noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-27580427476915746232017-09-04T14:30:56.884-07:002017-09-04T14:30:56.884-07:00Very interesting. Non-correlated meaning some had...Very interesting. Non-correlated meaning some had it, but not a significantly higher (or lower) % than people with other causes. It doesn't make sense to me how it could, but none of these symptoms have made sense to me these last few months, and I'm an MD! The surgeon was ready to operate on me before the fascics hit in earnest. He called it off until neuro workup done (all negative except high CPK). It's basically done, but ironically, my original complaint, the paresthesias following the injury, have basically subsided. So I, like you for a while, an in limbo. <br />Your blog has gone to other topics now; did you get better?Ryanhttps://www.blogger.com/profile/16176600191937346019noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-71969071105088995822017-09-04T14:12:47.388-07:002017-09-04T14:12:47.388-07:00As far as I know the people claiming spinal injury...As far as I know the people claiming spinal injury can have their symptoms coming from another cause? As for your second question that was never asked in my survey, I have no data. As for the final question, there is no correlation between the face and spinal injuries as I kind of eluded to earlier, there is really no correlation to make any kind of assessments. I doubt you will find a similar case to yours, BFS is highly unique and individualized. PT Bohanhttps://www.blogger.com/profile/10101195261695989996noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-14529977138346392832017-09-04T14:02:47.055-07:002017-09-04T14:02:47.055-07:0011%! Wow, that seems significant given that I coul...11%! Wow, that seems significant given that I could only find 7 case reports in the medical literature, and none since the 70s. Does this group also have cramps? Did any indicate that they had received corticosteroids as a treatment for the spine? Did any of this group have fascics above the level of their injury, i.e. the face? Ryanhttps://www.blogger.com/profile/16176600191937346019noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-33692067610261484402017-09-04T12:24:44.796-07:002017-09-04T12:24:44.796-07:00Ryan, about 11% claim to have BFS issues from a sp...Ryan, about 11% claim to have BFS issues from a spinal injury. Since people can claim more than one cause, only a few people have said a spinal injury is the lone cause (2%). There is not direct correlation with a spinal injury to any one symptom. This tells me that symptoms vary from spinal injury to spinal injury. This is not surprising. I have BFS to be very unique from person to person. No two people have the same issues regardless of the cause. To make matters worse, remedies are also unique. What works for one person will not necessarily work for another. I wish I had better answers for you, but this may help explain why we know so little about nerve disorders. PT Bohanhttps://www.blogger.com/profile/10101195261695989996noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-15140287026794870102017-09-04T10:27:45.024-07:002017-09-04T10:27:45.024-07:00Hi there. I am 45 and have been vexed with "...Hi there. I am 45 and have been vexed with "benign" fasciculations for 4 months now. I am very interested in your research as there is so little of it out there. I am particularly interested in the "spinal injury" classification of BFS, as neither my neurologist nor my neurosurgeon believes that a neck injury should lead to "lower motor neuron" symptoms in the rest of my body. (I have found some old case reports that contradict their assertions). What % of your "patients" were triggered by a spine injury? Did those patients also experience fasciculations everywhere from the face on down? Cramps? I look forward to hearing from you.Ryanhttps://www.blogger.com/profile/16176600191937346019noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-79497226086577130212013-06-20T07:33:19.064-07:002013-06-20T07:33:19.064-07:00Hi Sue,
That is correct, you cannot always feel ...Hi Sue, <br /><br />That is correct, you cannot always feel the twitches. Many are small muscle fiber twitches. That is good, because the bigger twitches that are felt can keep you up at night. <br /><br />PT Bohanhttps://www.blogger.com/profile/10101195261695989996noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-25623377902354223032013-06-20T06:03:42.571-07:002013-06-20T06:03:42.571-07:00Hi Patrick
Thank you for your articles. My husba...Hi Patrick<br /><br />Thank you for your articles. My husband recently noticed twitching in both his calve muscles. We started reading articles on the internet about ALS and were extremely worried. We went to a neurologist last week and he did a full examination and said that he was 99.999% sure it was BFS. In BFS are the twitches always felt as my husband cannot feel the twitches.<br /><br />ThanksAnonymoushttps://www.blogger.com/profile/00264316972307088256noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-31935592452495901002012-08-26T19:27:52.532-07:002012-08-26T19:27:52.532-07:00I applaud your positive attitude, Patrick!I applaud your positive attitude, Patrick!CWhttps://www.blogger.com/profile/18093393578438689105noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-31852158358194194552012-08-26T10:30:04.173-07:002012-08-26T10:30:04.173-07:00Yes, BFS can be very difficult, but it is certainl...Yes, BFS can be very difficult, but it is certainly better than other neurological disorders - so for many reasons I am happy with what I got because it could be worse. PT Bohanhttps://www.blogger.com/profile/10101195261695989996noreply@blogger.comtag:blogger.com,1999:blog-6889986006783300070.post-74546052871586219622012-08-26T07:46:51.037-07:002012-08-26T07:46:51.037-07:00It sounds like a terrible thing to live with, Patr...It sounds like a terrible thing to live with, Patrick. The human body, as miraculous as it is, can be a terrible source of frustration sometimes when it comes to understanding its mysteries. <br /><br />You did a very good job on your paper and it looks like you did a lot of work. I hope you will ultimately get to share it in a forum where other people with the same condition will have the opportunity to read it.<br />CWhttps://www.blogger.com/profile/18093393578438689105noreply@blogger.com