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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hass11 | @hass11 | Jul 13 8:13am
In reply to @jod12 "I'm so thankful for this thread . I hope you all continue to share your findings..." + (show)
@jod12

I'm so thankful for this thread . I hope you all continue to share your findings . My BFS started after a bad bacterial strep A infection that lead to sepsis shock . Around three months later I went through severe emotional stress and that's that's the twitches begun. Symptoms are worse when I am sick but the trouble is I'm getting sick all the time sometimes once a mo the sometimes twice a month . I do think there's a stress and sleep related aspect to mine. and I'm currently sick so this isn't helping much but when not sick what seems to help is telling myself I'm healthy , I'm safe and trying to think positively about the trauma that I believe led me to get this including the sepsis shock. When I start worrying about my health and my body my pains and twitches get worse. That's all the observations I have for now. I've cut out sugar and bread mostly and am trying meditation and breathing now. I will keep sharing whatever I find. My blood work shows positive anti nuclear antibodies speckled and my liver blood work its not looking good . I also have petechiae and kerastis pilaris

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I have body pains, twitches, and cramping feelings as well for a few years. also had a positive ANA but nothing else out of the ordinary. hope your doing well! wish you the best. this isnt fun to deal with. How are you doing now friend?

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1 reply
celia16 | @celia16 | Jul 13 8:35am
In reply to @hass11 "I have body pains, twitches, and cramping feelings as well for a few years. also had..." + (show)
@hass11

I have body pains, twitches, and cramping feelings as well for a few years. also had a positive ANA but nothing else out of the ordinary. hope your doing well! wish you the best. this isnt fun to deal with. How are you doing now friend?

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I just had a positive ANA too. Not sure what that means yet.

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1 reply
cjankowski99 | @cjankowski99 | Jul 14 9:27am

I am battling this since 2017 I had MRIs blood patches for leaks, tried numerous drugs. They made me feel like a zombie so I stopped taking them. They didn’t work anyway seeing a muscular neurologist for the past three years no help there having an appointment to get an EEG done. I had acupuncture several times, CBD oil CBD cream physical therapy magnesium Nothing seems to help my twitching on the left side. It gets so bad that it feels like my left side is all bruised.

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1 reply
cjankowski99 | @cjankowski99 | Jul 14 9:28am
In reply to @cjankowski99 "I am battling this since 2017 I had MRIs blood patches for leaks, tried numerous drugs...." + (show)
@cjankowski99

I am battling this since 2017 I had MRIs blood patches for leaks, tried numerous drugs. They made me feel like a zombie so I stopped taking them. They didn’t work anyway seeing a muscular neurologist for the past three years no help there having an appointment to get an EEG done. I had acupuncture several times, CBD oil CBD cream physical therapy magnesium Nothing seems to help my twitching on the left side. It gets so bad that it feels like my left side is all bruised.

Jump to this post

I also had a positive ANA

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1 reply
fela0218 | @fela0218 | Jul 20 6:58am

I've had the same fasculations for 3 years. They have really never completely stopped but have lessened. I had an MRI of the brain and and EMG of my legs because thats mainly where they are but I get them everywhere. Both tests normal. So to me there's nothing really to test. A brain MRI would of showed something abnormal if it was serious. And an EMG checks for serious illness like ALS. Somedays it makes me stress and get worried I just have to give it to GOD. I do exercise 4 days a week. Eat healthy and try to relax and reduce stress and anxiety but it's hard. I can accept it if its benign it just worries me if it something else. I just didn't follow up with neuro anymore when those tests were negative. Believe it or not my family doc said her working partner had the same thing and freaked out thinking it was ALS and had same I did, tests and both were negative. Its nice to know there are more of us out there that have the same issue. Im 42 now . May God Bless all of you and may he pour his love and mercy upon you to better days ahead. Have hope in the Lord.

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2 replies
fela0218 | @fela0218 | Jul 20 6:59am
In reply to @cjankowski99 "I also had a positive ANA" + (show)
@cjankowski99

I also had a positive ANA

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So do I but that doesn't mean anything.

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fela0218 | @fela0218 | Jul 20 7:04am
In reply to @celia16 "I just had a positive ANA too. Not sure what that means yet." + (show)
@celia16

I just had a positive ANA too. Not sure what that means yet.

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Doesn't mean much. Rheumatologist has to rule out autoimmune diseases. So a referral can be made. I went through that with neuro he checked my ANA was postivr and sent me to Rheumatologist. They did numerous lab work like 30. All normal. Except on other lab for connective tissue disease slightly elevated but not enough to be connective tissue especially since I don't have symptoms of connective tissue. ANA can be positive and mean nothing most people have a positive ANA but positive with autoimmune symptoms and other positive labs would warrant a diagnosis of an autoimmune disease. Also positive ANA is genetic so if your mom is positive most of the time her kids will too. Hope this helps

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cjankowski99 | @cjankowski99 | Jul 21 9:15am
In reply to @fela0218 "I've had the same fasculations for 3 years. They have really never completely stopped but have..." + (show)
@fela0218

I've had the same fasculations for 3 years. They have really never completely stopped but have lessened. I had an MRI of the brain and and EMG of my legs because thats mainly where they are but I get them everywhere. Both tests normal. So to me there's nothing really to test. A brain MRI would of showed something abnormal if it was serious. And an EMG checks for serious illness like ALS. Somedays it makes me stress and get worried I just have to give it to GOD. I do exercise 4 days a week. Eat healthy and try to relax and reduce stress and anxiety but it's hard. I can accept it if its benign it just worries me if it something else. I just didn't follow up with neuro anymore when those tests were negative. Believe it or not my family doc said her working partner had the same thing and freaked out thinking it was ALS and had same I did, tests and both were negative. Its nice to know there are more of us out there that have the same issue. Im 42 now . May God Bless all of you and may he pour his love and mercy upon you to better days ahead. Have hope in the Lord.

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Yes, it does get frustrating though when you don’t know what’s causing it I have a muscular neurologist appointment on Wednesday of this week and EMG scheduled. If I don’t get any answers, this will be my last appointment.

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1 reply
fela0218 | @fela0218 | Jul 22 6:32am
In reply to @cjankowski99 "Yes, it does get frustrating though when you don’t know what’s causing it I have a..." + (show)
@cjankowski99

Yes, it does get frustrating though when you don’t know what’s causing it I have a muscular neurologist appointment on Wednesday of this week and EMG scheduled. If I don’t get any answers, this will be my last appointment.

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Let us know how it goes.
I pray God give you peace.

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whymustwesuffer | @whymustwesuffer | Jul 23 7:07pm
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.

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New sufferer here. Have the twitches all over and all day long (every 3-20 seconds a new one occurs somewhere on my body that lasts 1 second to 10 seconds), and what most folks talk about is exactly what I am dealing with. Doctor told me to take Magnesium & Vit D for now since this just started 7 days ago. Just did a regular physical without a Vitamin Deficiencies check (everything came back normal and negative), and told my doctor about this new issue right after getting results. Will have to wait before doing more tests.
Do you still do the Magnesium and Melatonin? Do you get jerks as you fall asleep as others have talked about? I do. Does the Clonazepam help considerably? I noticed over the 5 years of your suffering, that you have reported that things have been considerably better with different things (B12, Clonazepam, etc).... but then no real mention of B12 and those other things again. So, now I have purchased B12 to see what that does. I realize you were experimenting with different things, but would like to know what might work or not. I liked your diary. That is helpful.
Also, I do have herpes (had it since a teenager) and wonder if that is the culprit, like another has said. I take Valtrex as needed for flare ups because it can hurt your kidneys for some of us if you take it everyday, but now wondering if I should take it more often? Did you ever get checked for Herpes? Anyone have anymore insight on that?

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