Do I have BFS?

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Do I have BFS?

Postby GaryO on July 28th, 2003, 11:19 am

Hi..I had never heard of BFS until today. I am wondering if I have it!!

I started developing twitching 6 months ago; it started off in my left arm then within 3 months I was twitching all over. Not 24 hours a day, but alot. Sometimes I would twitch in th eclaf for an hour, and then in my bicep for an hour. I also felt heavy in my legs, especially when walking up stairs or exercising. The twitching seemed worse at night and after exercise.

For 3 months or so I though I was going to die. I stopped all exercise and became something of a hermit.

I saw a neurologist in the March. Bloods were normal. EMG was normal. He did not offer a diagnosis but said ther was nothing clynically wrong and I should wait and see how tthings panned out. I am a bit regretful that I did not ask more questions but I was so relived to get good news that I left without really finding out anything about what might explain my symptoms. That was in March.

After March I actually stopped twitching over a period of a month or so. I seemed to make a full recovery and I assumed that whatever I had had was down to stress. (I was definitely worried I had a real nasty disease and that was making any stress i had alot worse).

It is now July and my twitch started again about two weeks ago..I am beginning to think I have a nasty disease again!!

What do you think....I suppose I should go back to the neuro?

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Postby Dale on July 28th, 2003, 11:45 am

Hi Gary - I'd suggest you make an appointment with a Neuro. We're not Doctors on this BB (none that I'm aware of...). Make the appointment & stay off the internet medical sites.

Take care & best of luck.


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Postby jcavan4125 on July 28th, 2003, 11:51 am

Your symptoms sound very typical of BFS. Fatigue on exertion, Generalized twitching and waxing and waning of symptoms. You didn't mention weakness but I assume there is none. The negative bloodwork and negative EMG pretty much rules out anything bad; though you may want a confirmatory EMG at the one year point just for your own peace of mind. The fact that your neurologist didn't specifically mention BFS is not surprising, BFS is just not that well known as a specific diagnosis, even amongst physicians. The fact that there are entity's that involve benign fasciculations is well known, but the diagnosis of BFS itself isn't. You should de-hermitize yourself and start living again. Good Luck!
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