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Benign fasciculation syndrome (BFS)

Brain & Nervous System | Last Active: Nov 14 4:35am | Replies (415)

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@tjb1982

I'm so curious that this is happening to both of your sons. I'm also experiencing fasciculations that have been called benign due to stress, but I'm not really stressed (other than about these recent symptoms). It started right after Thanksgiving that my tongue felt like it was alternately burning and numb, then I managed to get Covid over Christmas (meaning I caught it sometime earlier in December). It was relatively mild, and just as the fever was breaking, I started feeling like my limbs were heavy. It went away after a week, but then the fasciculations started above my right knee, and then weakness to the point where I was hobbling around for about two weeks. During that time, the fasciculations spread to other parts of my body and they are still there. The weakness in my legs has almost gone, but oddly has moved from the front of my thighs (just above the knees) to the back of my thighs and calves, and it's turned into spasms instead.

The fasciculations are pretty much everywhere, but mostly in the knees, shoulders, biceps, back, and abs. During this time I went to several doctors, got MRIs for my head, cervical, thoracic, and lumbar spine, and EMG/NCS. All were negative, which I'm told definitely rules out MS and MND (i.e., ALS, etc.). My tongue however has started to feel weak in addition to the numbness and burning. I have no idea if that's related or not, but it seemed to happen in close proximity to the fasciculations and other weakness.

I also, just anecdotally, got fasciculations when I got the Covid vaccine and boosters. Just for a few days up to a week, I would say. Didn't think much of it until this (fasciculations and weakness) started happening.

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I also want to point out that I'm on a long term 20mg daily dose of Omeprazole for an unrelated condition called Barrett's esophagus. I've read that reducing stomach acid long term can affect several vitamins and minerals (e.g., B12, calcium, magnesium). I was tested for all of these, and B12 and D wer the only ones that have been consistently on the low side (B12 was 250-300 ng). I believe one neurologist told me it should be above 400 or 500 for neurological symptoms, but I might have misheard that. I'm currently taking 1000mg of b12 every other day, and my levels are around 600ng, without symptom reduction, unfortunately.