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Benign fasciculation syndrome (BFS)

Brain & Nervous System | Last Active: 1 day ago | Replies (415)

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@mmz5944

I too back in 2008 saw a Neuro in CLE for twitching and was told BFS. At the time they were rough and sleeping was horrible. I kind of learned to live with it. No EMG at the time. Over the last 13 years I somehow was able to deal with it. I thought MS and all the usual ones. Over that time I had several brain MRI’s all negative. Fast forward to the end of last year I had a case of shingles and started noticing a numbness and tingling in left foot shortly thereafter. Then it also started in the right foot. Then after a mild bought of covid I started really noticing the BFS. I felt some weakness and driving with my right foot felt numb like. Sitting watching tv my calves were rocking. I saw neuro again in CLE and had EMG in leg along with blood tests which were fine. Also a CT scan of spine which showed mild stenosis and mild bulging of some of the discs from top to bottom. They ruled out anything sinister but my worry is still off the charts. Sleep disturbances and rough nights trying to sleep and eye issues and the swallowing/talking thing is noticeable to me. Hands feel funny at times too. They had me start taking Alpha lipoeic acid 600mg daily. I have been able to walk 3 miles without any issues and I do not see any atrophy but I get how we all keep thinking there is something that was missed. I keep telling myself that if I had something 13 years ago it would have already shown by now. I did read however that recent viral infections, (I had two) can bring on BFS. I also read that long covid has many of these symptoms that run on the GBS spectrum. So I relate to all of you wondering if this will ever go away. I too am a constant worrier with a “doomsday” personality. Stress always seems to hit the top of the BFS list but maybe I am just so used to stress I don’t know it is even affecting me anymore. Retired law enforcement.

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Replies to "I too back in 2008 saw a Neuro in CLE for twitching and was told BFS...."

I don’t know how you manage continuing fasciculations.. It can be very distressing. Thank goodness, mine have subsided and I have none of them any longer. Whatever the cause……I may never know. Just hope they don’t return, but if they do, I won’t panic.