1. < Brain & Nervous System

Benign fasciculation syndrome (BFS)

Posted by captainanxiety8 @captainanxiety8, Mar 10, 2019

Not sure if this is the right place to ask this, but I'm really not sure how to interpret what's going on. I'm 40, have had random twitches now and then around my body for a few years and ignored them. Mentioned it to my Doctor last year during my annual routine health check and she said it's likely just stress and ignore it. Got sick a month ago, high fever, headache, dizziness, chills, and near constant twitching in different spots all over my body. My knees were going crazy and my biceps were twitching, I felt like my body was malfunctioning. I was also itching all over and my extremities were aching, especially in my feet and hands, but when I pressed or touched my feet or hands, there was no pain spot.

Two weeks after I got referred to a Neurologist who checked my strength, did not do any EMG or MRI, no other tests, just testing if I could physically push back or feel anything below my knees and past my elbows. He laughed and said I have benign muscular fasciculation syndrome and gave me some Xanax. I went for a second opinion and got the same diagnosis, benign muscular fasciculation, and was asked to return after a few months to check on me. The twitching is not as constant as before, but it's still happening, arms, lower and upper legs, knees, neck, shoulder, chest, they last a few seconds and stop. I can't sleep, the itching and the twitching wakes me up at night. The twitching does not go away when I move the muscle, it keeps twitching. Has anyone else ever had anything like this? If so, how or did it resolve?

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celia16 | @celia16 | Apr 3 8:19am
In reply to @captainanxiety8 "Didn't think this thread would go this long. I started the initial post over five years..." + (show)
@captainanxiety8

Didn't think this thread would go this long. I started the initial post over five years ago. I'm still twitching, not as awful as it was when it first started. No weakness or loss of ability thankfully. If I go by what I've read online, I should be clear of anything serious. I still see a neurologist once every 6 months, more for peace of mind. If I get a hotspot, I take Clonotril(Clonazepam) 0.5mg in the evening before bed for a few nights and the hotspot goes away. Whatever this is, it's a curse that will likely never go away, which makes me deeply sad. But I've learned to live with it and have a few ways to mitigate it when it gets really bad. The Reddit forum helped me a lot through this.

Jump to this post

Can you elaborate on the hot spot? I had that too, eventually joined by BFS! Neurologist ruled out neuropathy and ALS. Also, prescribed Clonazepam!

REPLY
fela0218 | @fela0218 | Apr 4 6:45am
In reply to @captainanxiety8 "Didn't think this thread would go this long. I started the initial post over five years..." + (show)
@captainanxiety8

Didn't think this thread would go this long. I started the initial post over five years ago. I'm still twitching, not as awful as it was when it first started. No weakness or loss of ability thankfully. If I go by what I've read online, I should be clear of anything serious. I still see a neurologist once every 6 months, more for peace of mind. If I get a hotspot, I take Clonotril(Clonazepam) 0.5mg in the evening before bed for a few nights and the hotspot goes away. Whatever this is, it's a curse that will likely never go away, which makes me deeply sad. But I've learned to live with it and have a few ways to mitigate it when it gets really bad. The Reddit forum helped me a lot through this.

Jump to this post

I am happy its till going!! Going on 2 years for me but like you not nearly as bad...diet and exercise has helped alot and just accepting it.

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fela0218 | @fela0218 | Apr 4 6:45am

I meant happy the thread is still going

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cjankowski99 | @cjankowski99 | Apr 5 5:31pm

I have left side twitching sometimes it’s so bad that I feel like I’m bruised, I have intercranial pressure which is pretty stable right now and they said the twitching is from a connection in the brain put me on different meds made me like a zombie went off of them did seven rounds of acupuncture didn’t work tried CBD oil didn’t work. I see a muscular neurologist nothing seems to help.

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mmz5944 | @mmz5944 | Apr 13 7:02am

I too back in 2008 saw a Neuro in CLE for twitching and was told BFS. At the time they were rough and sleeping was horrible. I kind of learned to live with it. No EMG at the time. Over the last 13 years I somehow was able to deal with it. I thought MS and all the usual ones. Over that time I had several brain MRI’s all negative. Fast forward to the end of last year I had a case of shingles and started noticing a numbness and tingling in left foot shortly thereafter. Then it also started in the right foot. Then after a mild bought of covid I started really noticing the BFS. I felt some weakness and driving with my right foot felt numb like. Sitting watching tv my calves were rocking. I saw neuro again in CLE and had EMG in leg along with blood tests which were fine. Also a CT scan of spine which showed mild stenosis and mild bulging of some of the discs from top to bottom. They ruled out anything sinister but my worry is still off the charts. Sleep disturbances and rough nights trying to sleep and eye issues and the swallowing/talking thing is noticeable to me. Hands feel funny at times too. They had me start taking Alpha lipoeic acid 600mg daily. I have been able to walk 3 miles without any issues and I do not see any atrophy but I get how we all keep thinking there is something that was missed. I keep telling myself that if I had something 13 years ago it would have already shown by now. I did read however that recent viral infections, (I had two) can bring on BFS. I also read that long covid has many of these symptoms that run on the GBS spectrum. So I relate to all of you wondering if this will ever go away. I too am a constant worrier with a “doomsday” personality. Stress always seems to hit the top of the BFS list but maybe I am just so used to stress I don’t know it is even affecting me anymore. Retired law enforcement.

REPLY
1 reply
celia16 | @celia16 | Apr 13 9:02am
In reply to @mmz5944 "I too back in 2008 saw a Neuro in CLE for twitching and was told BFS...." + (show)
@mmz5944

I too back in 2008 saw a Neuro in CLE for twitching and was told BFS. At the time they were rough and sleeping was horrible. I kind of learned to live with it. No EMG at the time. Over the last 13 years I somehow was able to deal with it. I thought MS and all the usual ones. Over that time I had several brain MRI’s all negative. Fast forward to the end of last year I had a case of shingles and started noticing a numbness and tingling in left foot shortly thereafter. Then it also started in the right foot. Then after a mild bought of covid I started really noticing the BFS. I felt some weakness and driving with my right foot felt numb like. Sitting watching tv my calves were rocking. I saw neuro again in CLE and had EMG in leg along with blood tests which were fine. Also a CT scan of spine which showed mild stenosis and mild bulging of some of the discs from top to bottom. They ruled out anything sinister but my worry is still off the charts. Sleep disturbances and rough nights trying to sleep and eye issues and the swallowing/talking thing is noticeable to me. Hands feel funny at times too. They had me start taking Alpha lipoeic acid 600mg daily. I have been able to walk 3 miles without any issues and I do not see any atrophy but I get how we all keep thinking there is something that was missed. I keep telling myself that if I had something 13 years ago it would have already shown by now. I did read however that recent viral infections, (I had two) can bring on BFS. I also read that long covid has many of these symptoms that run on the GBS spectrum. So I relate to all of you wondering if this will ever go away. I too am a constant worrier with a “doomsday” personality. Stress always seems to hit the top of the BFS list but maybe I am just so used to stress I don’t know it is even affecting me anymore. Retired law enforcement.

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I don’t know how you manage continuing fasciculations.. It can be very distressing. Thank goodness, mine have subsided and I have none of them any longer. Whatever the cause……I may never know. Just hope they don’t return, but if they do, I won’t panic.

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1 reply
steige | @steige | Apr 13 9:32am
In reply to @celia16 "I don’t know how you manage continuing fasciculations.. It can be very distressing. Thank goodness, mine..." + (show)
@celia16

I don’t know how you manage continuing fasciculations.. It can be very distressing. Thank goodness, mine have subsided and I have none of them any longer. Whatever the cause……I may never know. Just hope they don’t return, but if they do, I won’t panic.

Jump to this post

How long did it take for your twitching to go away completely?
Hooray for you!

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1 reply
celia16 | @celia16 | Apr 13 9:56am
In reply to @steige "How long did it take for your twitching to go away completely? Hooray for you!" + (show)
@steige

How long did it take for your twitching to go away completely?
Hooray for you!

Jump to this post

I had one intermittent twitch in one foot that started several years ago near a hot spot that began several years ago. It wasn’t all that bothersome. Then, in November 2023. I developed body wide twitches all over. They were intense and surfaced mainly when at rest. After my tests at the neurologist ruled out MS, ALS and PD, I was relieved. A couple of weeks later, they stopped. I haven’t had any in several months. I don’t even have that one in my foot anymore. The hot spot is almost completely gone too. I only feel a little heat there occasionally. But, barely there. And, the numbness that I had in my feet is gradually subsiding.

I have no explanation. I will say that I have been working out 5-6 days a week, eating a nutritious diet, seeing a therapist and improving my blood sugar management. (type I diabetes)

REPLY
mbdave | @mbdave | Apr 14 11:56pm
In reply to @captainanxiety8 "Didn't think this thread would go this long. I started the initial post over five years..." + (show)
@captainanxiety8

Didn't think this thread would go this long. I started the initial post over five years ago. I'm still twitching, not as awful as it was when it first started. No weakness or loss of ability thankfully. If I go by what I've read online, I should be clear of anything serious. I still see a neurologist once every 6 months, more for peace of mind. If I get a hotspot, I take Clonotril(Clonazepam) 0.5mg in the evening before bed for a few nights and the hotspot goes away. Whatever this is, it's a curse that will likely never go away, which makes me deeply sad. But I've learned to live with it and have a few ways to mitigate it when it gets really bad. The Reddit forum helped me a lot through this.

Jump to this post

I'm somewhat in the same boat. It's been almost 2 years and the first 2-3 months were the worst. I've recently had this month or so long flare up in my upper stomach that twitches 30+ times a day. When I get that, it makes me nervous, but have mostly just learned to live with it as nothing really works. While it sucks, I'm glad to know there are others out there who can be supportive.

REPLY
kmtp29 | @kmtp29 | Jun 23 1:02pm

Following. This diagnosis has changed my whole life and for the worst. All they do is compound medication’s to try to help. I can’t even walk around the block without problems. At least a week out of each month I am unable to do anything Except for try to find positions not to cramp up. Try to find a way to sleep. And try to find a way to keep on living. It’s just the worst. And I have three young boys that suffer because of it as well. Nothing seems to help. Nothing

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