Benign fasciculation syndrome (BFS)

Never had mg and potassium tested. But I was b12 and d deficient in oct. At that time only thing I experienced was pain in my legs and toe finger twitch. I have shoulder twitching for at least 5 years. However, since going to doctor and doing initial emg my twitching is wide spread including back, buttock, lips, eye brows, eyes etc.

I take b12 and d everyday.

This is a Mayo video which helps me to come to terms with my diagnosis of BFS

After experiencing many of the same symptoms months ago I was anxious about ALS until it became clear from research that BFS is literally thousands of times more common than ALS, which is extremely rare and usually accompanied by other symptoms. My symptoms became gradually worse until it was messing with my sleep and moved to almost every part of my body at one time or another. Checking my bloodwork from about six months earlier I noticed that in addition to being slightly high in thyroid reading, my calcium level was at the bottom of the normal range, so I started calcium supplements (ground egg shells) and the symptoms have largely disappeared, though I have an occasional hand or leg twitch. I knew if I went to the doctor he would probably have wanted to do all kinds of things to CYA. A lot of the internet sites that have information about BFS don't mention just how rare ALS is and this tends to scare people needlessly.

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.

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.

I recall reading somewhere recently that anxiety induced BFS has a particularly high incidence rate among clinicians. (The word they used in the article below is "overrepresented".)
https://pubmed.ncbi.nlm.nih.gov/31174866/
Your story reminded me of this article, because you're a professional working in the medical field.

I think I might have a helpful analogy: the doctors you typically will see are like high school teachers. Going to a research hospital or, eg Mayo Clinic is like going to the professors. Even the professors are a mixed bag, but in my experience, asking a high school teacher for information within their subject area that's not specifically on the curriculum usually doesn't lead to satisfying results. Doctors on the ground are not to be put on a pedestal by any means. They're just people with biases, finite experience and education, providing advice based on mainstream ideas that were parroted to them by their teachers and mentors, just like any other profession.

@captainanxiety8 You are describing my symptoms to a T. Mine started about a year and a half or two years ago. I kept having strange sensations all over my body and twitching from the top of my head on the scalp all the way down to my feet including pecs, abs, shoulders, all over back including lats, eyelids, facial muscles, neck, glutes, thighs, calves and the inside of my thighs just below my privates. I also get aches and slight burning sensations all over my body. The pain and sensation is never severe but it's there. I describe the pain as being similar to an old injury so it's dull. I often get pains in my knuckles and the various joints of my hands and feet. All of the symptoms come and go. I can have weeks of hardly any symptoms then I get a flare up which is usually accompanied by insomnia or sleep disruption. I sometimes get itchy skin too which is a nuisance when I am trying to sleep. I noticed that when my skin itches I tend to sweat a lot overnight in bed but this doesn't happen all the time.
I had an MRI scan on my brain and spine and both were normal. I had countless blood tests which all came back normal. There were no antibodies for Lupus or Isaacs Syndrome. No deficiencies or anything abnormal. I am waiting to get an EMG (Electromyography) test.
The Neurologist conducted the same tests you described your doctor did on you and all of that was normal too.
She said I might have Isaacs Syndrome (but this was before the blood tests which showed no antibodies which are found in around 50% of people who have Isaacs Syndrome) or I might have BFS.
I think it's probably BFS because it is very common and I have been under a lot of stress related to full time work and full time university commitments. Isaacs syndrome is also less likely because it is extremely rare. So far only around 200 people are known to have it worldwide.
Despite the annoying symptoms (the insomnia and anxiety being the worst) I feel totally fine. I haven't lost muscle mass or strength and my coordination is normal. I go to the gym regularly where I lift heavy weights and do intense cardio.
I really think it's BFS which is not fatal, progressive or serious in any way. It sounds like you have the same so I wouldn't worry too much about it because stress and anxiety make it worse. I hope I have helped putting your mind at easy. Stay healthy. All the best. Harry (From Glasgow, UK)

I’m a recently retired 22 year USMC veteran and over the past year have developed some strange symptoms. I get intermittent fasciculations from head to toe, some days worse than others, some muscles worse than others, just depends on the day. I also randomly get this burning itching feeling from head to toe that comes and goes. Other occasional symptoms are intermittent eye and head aches, muscle and joint pain… again… all intermittent.
I have seen a Neurologist and have had MRI’s of both brain and upper spine and they also performed an EMG on my upper extremities. No daunting abnormalities with the only findings in MRI were mild spinal stenosis (I was a Marine for 22 years, so not surprised) and EMG revealed ulnar nerve neuropathy (again, not surprised) after 22 years of beating up my body. All symptoms come and go with some days increasing in intensity and some days I am rather normal. I also get some numbness and tightness in my face and lips, seems to cause me to talk goofy at times. I have no noticeable weakness other than sometimes my muscles feel tired (my guess is from muscle twitching) but I don’t stumble or drop things. I also get random racing heart and my BP bounces all over the place.

I am following up with a new Neurologist at the end of the month to see if they have anything to tell me or prescribe me so we shall see. Anyone else have similar issues?

Hello @rwtiii and welcome to Mayo Clinic Connect. I wanted to bring you into a discussion with other members who have shared about their fasciculations, so you will notice I have moved your post here:
- Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

@harryfrenchuk is new to this discussion and other members who may be able to come in include @tjb1982 @bpaul @miep and @realshadowfax.

Has BFS been mentioned to you previously?