Benign fasciculation syndrome (BFS)

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.

I had an outbreak of fasciculations last summer that started with one finger twitching and eventually grew to spasms throughout my body that disrupted my sleep and scared me a bit. I did research on my own and found that BFS is way more common than any of the serious illnesses. As I reported in an earlier post, I noticed that in my last blood test my calcium levels were in the low normal range so I started supplementing my diet with crushed egg shells (which is a good source of calcium). Starting in around October my spasms and twitching began to subside and are now at a very low level. I get an occasional spasm but it does not disrupt sleep. I can't say for sure it was the calcium that caused the problem but from my research it appears nutrition or lack thereof can often be a factor with BFS. I hope this helps in some way and that your condition improves over time.

I already had neuropathy when I received my second dose so they blame it on that. My fasciculations started about 3 weeks after my 2nd dose. My friend with a neuromuscular disease was told by his neurologist not to get a booster. From what I'm seeing this side effect is more common than they are letting on. My legs fasciculations are 24 hours a day. I don't feel them as long as I'm moving. The only thing that helps me is ice,I put it on my feet and under my knees and it calms them down a bit. My body was already jacked up after taking Lipitor so who knows what drug caused it. I haven't been able to rest because of these fasciculations.

This sounds awful, sorry to hear you are going through that. I have a lot of the same issues… add burning itching skin to that list. I am going to my second neurologist tomorrow so I guess we will see. Good luck and keep your head up.

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.

Im 46 and just got diagnosed after years of struggling. It’s unbearable. Any type of activity brings it on. Any kind of stress. It leads to sleepless nights and tough days. I empathize. I have no answers. I’m supposed to get some Botox injections but and other injections I’ve done have made symptoms worse. I honestly don’t know if I can go on like this.

I started this thread 4 years ago when my fasciculations first started. It took 2+ years to get close to getting it relatively under control. I had a regimen that worked, 200mg of Magnesium + 3mg of Melatonin before bed at night, then another 200mg of Magnesium in the morning. If a hotspot started, I would add 0.5mg of Clonazepam at night and the hotspot would be gone the following day. This worked for a while, I had several good months. It doesn't seem to work anymore, not sure if my body grew tolerant. I had an eyelid twitch on my upper left eyelid that dragged for about 7 months before I got botox which stopped it. Now 5 days ago my entire chin started twitching, with rippling fasciculations around the right side of it and sometimes on the left side of it. My regiment of Magnesium, Melatonin, and Clonazepam has zero effect on it.

This is a disease, and it brings misery. It's not life threatening, but it has eliminated any semblance of quality of life that I might have had. I would give anything to cure it, anything.

Fasciculations - I really this will help some of you. Atenolol controls mine. I'm 64. In my 20s and 30s, I had trouble with massive fasiculations primarily in my calves and feet -- 100 going at a time. Mine are due to my rare Hereditary Neuropathy with Pressure Palsies (HNPP). Occasionally, I get them in my face or hands. All of you that have them all over your body must go crazy due to them. I feel for you. At 40, I started on Atenolol for hypertension. I didn't make the connection, but at some point I realized I hadn't had the fasciculations for about 15 years. A few years ago, I decided to try going off atenolol mg since my blood pressure and heart rate had improved over the years. I was off it for about a week and the fasciculations immediately went crazy. They would start the minute I sat down at night, then within 5 minutes my feet were jerking around they became so strong and within 10 minutes they had turned into horrid muscle cramps that had me jumping out of my chair and bed all night. I went back on the atenolol 50 mg and slowly they started improving. I'm going to guess it may have taken a few weeks (can't remember exactly). They never went away completely like they did the first time, but went back to 90% improvement. Cancer meds have given me low blood pressure now so I should go off atenolol altogether, but I can't because of the fasciculations so I now take 25 mg and they are still 90% improved. My cardiologist believes even 12.5 mg would be enough to control them, but I've been afraid to reduce it to that. Atenolol is an old, inexpensive drug that lowers blood pressure and heart rate. I'm really hoping this may be the solution for some of you. I just googled atenolol and twitching and oddly enough it states that it (beta blocker) can cause muscle twitching, other answers say it stops them. For me, it's a miracle drug. My neurologist and cardiologist both are on board with me taking this for my fasciculations. My fasciculations never had anything to do with anxiety so I'm sorry some of you were told that. That's what you hear when doctors can't figure something out. Hope this helps someone!

I've had BFS with cramps for almost four years. Saw primary doc, endocrinologist, and neurologist for two and half years. Finally got referred to a neurologist that specializes in neuromuscular disorders. They tested me for ALS because I had a lot of symptoms. He confirmed it was not ALS and diagnosed me with BFS. I take Kepra, gabapentin, and baclofen. Almost maxed out on all of them before I finally started getting some relief. Most nights are good with no severe cramps. But, I do still have nights when I can't sleep at all because as soon as I relax, I cramp. You should insist on seeing a specialist in neuromuscular. The symptoms of BFS are the same as ALS. You need to ensure you don't have ALS.

I was tested for ALS, MS, MG, etc. 8 years ago not because of my fasciculations, but because I was suddenly aspirating everything I was trying to eat. I struggle with difficulty controlling food in my mouth, fatigue of chewing muscles, and having food slip down my throat before I'm ready to swallow causing aspiration. I was afraid I had ALS. I lost 25 pounds in a month because I couldn't take aspirating anymore so I quit eating. They did all the testing and determined that it was all part of my HNPP (Hereditary Neuropathy with Pressure Palsies) I've had issues with since my teens. Two neurologists agreed and one was a neuromuscular specialist. My diagnosis was revised to HNPP with Cranial Involvement. I've just learned to what I can and can't eat, keep my head down, etc. I was relieved it wasn't ALS!

I agree that you should look for a neurologist that specializes in your particular issues.

I think I really need the atenolol 50 mg to fully control the fasciculations, but 25 mg keeps them tolerable and from turning into cramps. Can't raise the dose now due to low BP caused my other meds.