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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
I would ask the doctor about electrolyte levels, too (PCP or neurologist). Sometimes fasciculations "just happen" and are "benign" -- which ultimately means they don't know what the cause is, but it sounds to me from the work up you've had so far that there's nothing life threatening, but you should obviously continue to work with your doctors to rule everything else out. Might need additional MRIs for the rest of your spine to try to rule out MS, maybe.
For context, I have had fasciculations for a few months that have come and gone (mostly gone lately), but a burning/numbness on my tongue that seems unrelated. EMG/NCS/complete CNS MRI revealed nothing remarkable, like yours. I'm continuing to monitor it, because if it gets significantly worse, then I'll head back in, at which point they'll likely send me to a research/teaching hospital (or, e.g., Mayo/Cleveland clinic). But it isn't debilitating at this point. Just feels like I burned my tongue on hot coffee for days on end.
My PCP and neurologist suggested anxiety and prescribed Lexapro 10mg daily, which may or may not have reduced the fasciculation symptoms, but hasn't affected the burning sensation, so I'm planning to stick with it for a few months (6 total) and then see what happens when I go off of it.
Unfortunately a lot of things can go wrong with the body and most things are not well understood or "idiopathic," "functional," etc. Someone made the comment that an anxiety diagnosis in a lot of cases is kind of like the old fashioned "hysteria" diagnosis, but ultimately if you end up there, you need to look for more opinions or ask yourself if it's really affecting your life enough to want to pursue it further. The big, well known things (particularly ALS) have been ruled out in your case, so I'm not sure how much farther your neurologist can/will go with you and may end up recommending a teaching hospital, etc.
good luck and keep us posted.
Replies to "I would ask the doctor about electrolyte levels, too (PCP or neurologist). Sometimes fasciculations "just happen"..."
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I want to add more detail because of what some others have posted about other medications and covid vaccine side effects, etc., because context is important.
My particular fasciculation symptoms occurred somewhat concurrently with weakness and tongue numbness/burning. I first noticed fasciculations in my abdomen/quads after taking the covid vaccine (starting in 2021). It also happened for each subsequent time I took the vaccine, but the fasciculations always subsided after 3-5 days. I got covid itself for the first time at the end of 2022, and about two weeks later, the fasciculations came back orders of magnitude worse and were coupled with weakness above the knees (I was hobbling around for about 10 days). The fasciculations spread around to my back and abdomen, then pretty much everywhere for several more weeks. The weakness and the fasciculations slowly subsided. I feel near normal now. I think it's reasonable to think that covid and the vaccine might have this kind of affect on some people, and that that's what I was experiencing.
However, I also had a sort of burning/numbness in my mouth (mostly in my tongue), that predates the fasciculations and is still something I experience. The neurologist I've seen is very clear that she thinks it's anxiety because it doesn't appear to have a neurophysiological root cause (i.e., it would be unlikely based on how the body is "wired" so to speak). I can only report on my subjective experience, but I think whatever is going on is not life-threatening, so that's why I'm taking a wait and see approach with the anxiety meds.
Additionally, I have an esophageal condition called Barrett's, which requires me to take a regular dose of omeprazole (Prilosec) every day indefinitely. I've been taking it since early 2020. There is evidence that chronic use of this drug can lead to certain nutritional deficiencies, in particular B12 and Calcium, but also some others (e.g., magnesium). That's why I mentioned asking about electrolyte levels. In my case, I was moderately low in B12 for a long period of time, which can cause neurological symptoms and may even lead to permanent damage. So it's possible that any number of my symptoms stem from that.
Long story short, I think it's possible that covid and the covid vaccine could be playing a role in my symptoms, but there isn't enough evidence. There definitely isn't clear evidence to correlate the tongue numbness/burning and the fasciculations, but it's possible that covid and the vaccine played a role in the fasciculations and weakness for me. It's also possible it's nutritional deficiencies from taking omeprazole chronically. It could also be something else that we'll never find evidence for. This is why I mentioned that the majority of things that go wrong in the body are idiopathic.