My (hopefully) BFS story

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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My (hopefully) BFS story

Postby DCGuy on September 27th, 2003, 8:22 am

Hi, everyone:

I have tentatively been self-diagnosed (although I am sure we all know how dangerous that can be) with BFS . My symptoms sound very similar to several stories on this website. My symptom history is as follows:

- About 4 months ago, left index finger twitched mildy for a night, which caused it to move slightly once or twice a second. Didn't think much of it.
- Two or three months later, left thumb twitched persistently for four days, then went away. Mistaking constant twitching for a "resting tremor" and having heard about Michael J Fox, I was of course 80% sure I had Parkinson's disease, despite no other symptoms for that disease.
- After two neurologists said PD was highly unlikely, I was doing OK. Then widespread twitching started, read about ALS on the web, and was somewhat concerned. Then I noticed what I thought was significant atrophy in right triceps, and after web research was 90% convinced of ALS. I also started getting brief muscle aches and increased nerve-type pain.

Obviously my anxiety level shot up big-time. A visit to previous neuro said "unlikely" ALS even though another degenerative condition could be possible, but probably like most of you here, I figured my hours of web browsing made me much better qualified at diagnosing neurological disorders than my neuro's 20 years of daily experience.

So I tracked down an ALS expert in the area, who gave me a neuro exam and EMG. AFter a normal EMG, he said there was zero percent probability of ALS based on his clinical findings at that time. He's unsure what could be causing the atrophy of triceps muscle, although since strength in that armed still seemed good, he thought it could be natural asymmetry. So far he hasn't given a definitive diagnosis, but I am hopeful it will eventually be BFS.

Sorry to be long-winded, but I had a few thoughts I wanted to share about my own experience so far:
- Anxiety is by far the most disabling symptom. When you think you have a terminal disease, you feel like you have a terminal disease. Now that my anxiety is reduced, I feel 90% normal.
- The power of the mind is amazing. At my peak of anxiety, I had nearly every ALS symptom I read about: trouble swallowing, shortness of beath, trouble sleeping, weight loss, etc etc. Once I got a grip, most symptoms magically disappeared.
- If this is the worst health problem I have in my life, I will consider myself lucky.
- Exercise is a little more difficult than it was, but it seems the benefits so far outweigh the costs.

I just thought I would contribute my apparently similar story. Hopefully I belong here!
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Postby jcavan4125 on September 27th, 2003, 10:38 am

The take home message from your ALS expert is zero chance of ALS. That's great news!! Are you sure the triceps is atrophy, I'll bet you have never paid that much attention to your body prior to the onset of your symptoms. Is it possible it was always that way? I am an avid weightlifter and former bodybuilder; even tough I work every bodypart equally, my measurements have never been symetrical. Most people's are not. A difference of 1/4 to 1/2 inch is common from one bodypart to the other.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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