Benign fasciculation syndrome (BFS)

I have twitching in both calves and sometimes thighs and butt. IDK how they come to conclusion that it’s benign. I most likely have long covid. Started 5 months after my infection with burning and PEM and the the twitching started (daily). I’ve had a brain MRI that shows innumerable white matter hyper intensities that neurologist initially said can’t say for sure what this is, the next Appt blamed it on hypertension, was dismissive and gave me a Benzo too. I was so angry. The fact is whatever I have is progressive and has been blown off. Just want to hand me Gabapentin and other drugs. How bout start with a diagnosis first ! Bad medicine. The only thing that helps is hot baths or heat pads.

Reading this thread has been very comforting to me, so I made an account and I'm going to pitch in with my experience. 32 year old woman here.

Towards the end of June (about 2.5 months ago) I began experiencing a sensation that felt like pressure was being applied to my throat, with no discernible cause. I became increasingly unsettled by this sporadic feeling, which would sometimes last for hours. I had a thyroid ultrasound (7/15) which came up with basically nothing (I have two benign nodules just hanging out in there) and an endoscopy (8/14) and barium swallow test (8/25) which were both clear. The sensation largely went away on its own, unexplained, toward the end of July (tests felt unnecessary since symptoms were over).

However, on August 2nd, I had what I believe to be a panic attack that awakened me from sleep around 1:30 in the morning. I have a long history of anxiety/depression, but I've never had a full panic attack. This consisted of about... 5-10 minutes of elevated heart rate, uncontrollable full-body shaking, and a consuming thought that my death was imminent.

After this happened, I became unable to sleep. My appetite plummeted (VERY unusual for me) and I've lost somewhere around 17 lbs. I'd be overcome by extreme anxiety any time I tried to sleep, and I started developing muscle aches in my limbs.

Two weeks or so into the sleep deprivation (which was severe enough that I started hallucinating a little at night after not sleeping at all for several days on end) I began experiencing muscle twitches. The twitching started in my left calf and spread to the thigh and foot, and then the right leg and right arm started getting twitchy. I also had (well, have) some numbness.

I immediately became terrified that I could have ALS and managed to get in to see a neurologist on 8/22. She did the standard neuro tests (which came back normal), ordered some bloodwork (also normal) and gave me a script to get a brain MRI with and without contrast, and an EMG, but she assured me that she did not think I had a serious neurological issue.

I got the MRI done on 8/28 and recently the results came back clear. I did the EMG/NCV on 9/1 and it also returned clear. I am somewhat frustrated that the muscle twitching wasn't happening during the EMG/NCV, because I feel like it would've picked up something, but the doctor assured me that there was no evidence of muscle deterioration indicated. However, there was no evidence of ANYTHING, and all the negative tests have been the opposite of reassuring. I felt like the doctors should’ve at least discovered a pinched nerve or something, since my limbs have been feeling so weird and thobby and numb.

The muscle twitching has been by far the most disturbing symptom, though, and has been preventing me from sleeping. I took a video of it to prove it, and I’ve generally been obsessing over how to explain the sensation to others. My family and friends generally believe that my anxiety has caused this, an opinion that sometimes angers me and sometimes comforts me.

There is a lot I didn't know about the medical realm, and unfortunately I have been panic-googling a lot. Like, the average person doesn't know the difference between a fasciculation and a spasm, but I sure as hell do now. I know, objectively, that it would be very statistically unlikely for myself (a 32 year old woman with no family history of neurological disorders) to develop ALS, but it is scary and not IMPOSSIBLE, and muscle twitching is such a hallmark of the disease. Learning that my body could just be doing all this weird stuff (BFS) without that same weird stuff actively working to kill me (ALS) has been a real relief, and hopefully reduces my anxiety for the near future.

My PCP is in communication with my neurologist, and they are going to look into any other testing that could be done, but honestly, I think it is a bit of a waiting game. If I'm markedly disabled in the near future, I have ALS. If I am not, I have BFS. And the latter is far more likely.

I guess I do have a question for anyone else reading this - does anyone else have numbness / soreness occasionally alongside the twitching?

I have many of these symptoms and have had much neurological testing, all showing nothing abnormal. Some of the medication’s I have been taking in the past and one that I am still taking maybe contributing to these muscles twitches but over the last nine months they went from Slight to constant to occasional. I am in a support group for benzodiazepine users who have been prescribed them for many years and muscle twitching is extremely common in that group. My doctor also took me off Lyrica because he said the symptoms worse. I understand the terror of thinking you have something really wrong with you because I spent a good part of the spring summer and early fall crying and thinking I was dying. I don’t know if you take any medication’s, but there are support groups for people who have these odd symptoms, and are taking benzos in particular, but also other psychoactive drugs. I had some of these symptoms often on for many years, so I don’t believe it has anything to do with Covid or the Covid vaccine as some people in this group have mentioned.

I am 49 and 2 years ago my eyelid started twitching. One year later, I had trouble walking and dizziness, which lasted 2 months. I also felt little burning zaps that happened randomly all over my body (I thought I was getting bit by something) 2 months ago I started having trouble walking again (balance and fatigue) still having eyelid twitching, skin zaps, and now the muscles in my feet twitch and my toes move on their own and sometimes curl. I also have numbness and tingling in my legs. I saw a neurologist who ordered an MRI that showed some white matter, but he said it was normal for my age. He also checked me for myasthenia gravis (neg) After 3 appointments he said he was "handing" me back to my PCP. He said I have anxiety. I am searching for another neurologist

@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)

Hi Harry, you are describing very similar symptoms to what I have been having for the last couple of months. Could you update us on whether your symptoms remain?

I have also (following period of life stress/anxiety) had twitches sporadically all throughout body, and burning/ice cold prickly tingling sensations on my skin all over my body.

Dan, London

@dc1995 I wanted to let you know how to send a notification to someone when you reply to their post. If you type their member name with the @ sign in front, like I did for you, they will get a notice in either e mail or the Bell icon On-site notifications at the top right of the screen. In this case, typing @harryfrenchuk will send them your response.

Jennifer

Hi all,

I have been reading this entire thread for the last hour. As most people do not have medical specialists on speed dial (quite the opposite; appointments take weeks), it is very helpful to have a platform to connect to people with similar experiences. We can help each other based on gained knowledge over time where others just started their journey..like me 🙁

I have been experiencing twitching since 4 weeks. It started with occasional twitch but is now more present (all over body, sometimes few hrs non stop). I have seen a neurologist who diagnosed BFS without EMG testing.

I understood that it is common for BFS patients to have twitching muscles that directly stop twitching when moved. For example, if tricep starts to twitch during rest, it should stop when moving the arm. Yes, it continues most likely thereafter, but during movement not.

Is this applicable to you all? Seems not entirely the case for me.

Looking forward to hearing your feedback!

I can’t recall about the details of moving various limbs, only that after my EMG was normal, my fasciculations stopped. They caused me a lot of amxiety, so I’m very relieved.

Can imagine, Celia! What about the others; do your twitches stop during movement?