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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
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?
Replies to "Reading this thread has been very comforting to me, so I made an account and I'm..."
@anxiousordying you’ve got to quit building this stuff up in your head or you will kill yourself from stress. I was in the same boat. For roughly two years I had severe muscle twitching, some soreness in various muscles and numbness that would come and go. I thought I had ALS and nobody could tell me otherwise. Eventually I was cleared by an EMG through my neurologist and everything except the twitching went away. I still twitch 24/7 but I’m learning to deal with it. My anxiety was so bad before my results that I had a couple of ALS symptoms including slurred speech and some tripping over myself because my equilibrium was all off. After the EMG cleared me of ALS, 95% of my symptoms disappeared with the stress except for the twitching. Please do me a favor and talk to a therapist as I did because the stress you’re dealing with WILL kill you. If your neurologist says you don’t have ALS then please believe him/her. They have endured years of schooling to determine this type of stuff. I hope this helps you in some way.
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.
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Oh, also, I am starting on a new antidepressant (escitalopram) as of this week & I'm hoping this will alleviate some of the sheer terror and despair I've been feeling on a daily basis. I forgot to mention that I've been taking Ativan (aka Lorazepam) as a sleep aid and it is the only thing that has worked, I suspect because it acts as a muscle relaxer. I have tried remeron, vistaril, and trazodone for sleep, as prescribed by my psychiatrist, and none of them put a dent in the hyper-awake state the twitching puts me into. The trazodone forced me to sleep, but I felt like my body forced me right back out of it again and was like "no, you aren't sleeping --you're twitching and getting anxious and also existing in a half-asleep state so you're not sure if this is a dream or not!" so that was really scary.