What can one learn from the above data? I think we can conclude the following:
- At a minimum, 387 people have been misdiagnosed and do not have BFS. They more than likely have CFS or Isaac’s Syndrome. In fact, Teerin changed my diagnosis from BFS to CFS and believes I am somewhere between CFS and Isaac’s syndrome. And no, the number of symptoms I am experiencing has not gone up since my initial diagnosis. In fact, all three neurologists I saw concurred that my diagnosis was BFS, which was wrong.
- This may explain why so many people, including myself, thought there was an overlap of symptoms between BFS and other neurological syndromes and disorders such as RSD and Fibromyalgia. I clearly assumed that after telling three neurologists all my symptoms and they concluded I had BFS than the eight symptoms I possessed were a part of BFS.
- Granted, people who reach out to social media forums on BFS are more likely to have more bothersome symptoms. This may explain why so many people in my survey have multiple symptoms (Over 99%). After all, a person diagnosed with BFS and only experiences muscle twitches occasionally or 24/7 and has no other symptoms, may be far less likely to join social media and participate in my my survey on BFS.
The real question is why do neurologists misdiagnose so many patients with BFS? This is a tough one to answer but here are a few of my thoughts on the subject:
- Most neurologists are clueless and can care less about Peripheral Nerve Hyperexcitation syndromes.
- BFS is a convenient diagnosis that can send patients on their way without any worry that they have something more serious like ALS and MS.
- Fasciculations or muscle twitching is a symptom that can be viewed both visually and by EMG. Other symptoms such as pins and needles, cramps, muscle fatigue and weakness (not atrophy), headaches, itching, numbness, muscle stiffness, muscle pain and soreness, muscle buzzing or vibration sensation, and sensitivity to temperatures are all harder symptoms to verify and are mainly subjective by the patient. Hence, it may be possible that neurologist may only diagnose what can be verified through technology and or observation. Maybe it was the fact that my muscles did something funky that enabled Teerin to change my diagnosis – he could see my muscles did not contract properly when they were hit with his reflex hammer. Or maybe Teerin believed me when I explained my other symptoms.
One important side issue of note I should point out that I learned from Teerin: 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 entitled “Cramp Fasciculation Syndrome in Patients with and without Neural Autoantibodies”. The abstract of the article can be found here: http://onlinelibrary.wiley.com/doi/10.1002/mus.23935/abstract. 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 can be wreaking havoc in our bodies.