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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falconhawaii | @falconhawaii | Nov 25, 2022
In reply to @johnbishop "Hi @falconhawaii - There is another discussion that members have posted about twitching in the toes..." + (show)
@johnbishop

Hi @falconhawaii - There is another discussion that members have posted about twitching in the toes that might be helpful.

-- Toe twitching/fasciculations?!:
https://connect.mayoclinic.org/discussion/toe-twitchingfasciculations/

Jump to this post

Thanks, I'll check it out.

REPLY
falconhawaii | @falconhawaii | Nov 25, 2022
In reply to @bpaul "Yes, for a number of weeks I was having twitching in the toes when at rest,..." + (show)
@bpaul

Yes, for a number of weeks I was having twitching in the toes when at rest, mainly when trying to sleep. I started wearing socks to bed and it seemed to help for some reason. I also frequently get the numbness in fingers but I attribute this to poor circulation. For what it is worth, I started taking calcium supplements several weeks ago and most of the my BFS symptoms have subsided, though I still get twitching and spasms almost every day. I noticed in my last blood test that my calcium levels were on the low side. Hope this helps.

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It's been awhile since I had blood work for this particular problem, so I should check on calcium and Vit B. Now I'm waking up at all weird hours with twitching, and a very restless foot, but more like it feels "powered" by something, not a tingling or a pins and needles, but like electrodes in there. I drink milk almost every day, so I have a hard time beliving this is mere calcium deficiency. But ya never know, thanks for the tip. On a side note, have you ever tried Scullcap supplements? I read it on these boards that it helps with RLS, and I've been on Scullcap for a few days, but so far, I see no improvements.

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alwaysanxious | @alwaysanxious | Dec 15, 2022

@captainanxiety8 checking in to see how you’re doing or if you’ve learned anything new. About 2 weeks ago I started having twitches in my calves and hamstrings out of no where and they haven’t stopped since. Occasionally I’ll get a few in my hands/arms but it’s more prominent in my legs. I shouldn’t have googled anything! Now, like mostly everyone here, I’m nervous I have something like ALS. I have a Neurologist appt but it’s a long wait list so I’m stuck waiting and there’s way too much conflicting information on the internet. I mean I’ve gotten so anxious that I’m lifting things and buttoning shirts and turning keys to see if I’m “weak” or losing muscle abilities. All my blood labs are “normal” including calcium, magnesium, B-12, potassium, thyroid etc. appreciate this thread and everyone sharing their journeys. It does help

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 28, 2022
In reply to @kathy62 "What is BFS?" + (show)
@kathy62

What is BFS?

Jump to this post

Benign fasciculation syndrome (BFS)

REPLY
bigt20 | @bigt20 | Jan 6, 2023
In reply to @captainanxiety8 "So I shared this on another forum, and people found it useful, so perhaps it might..." + (show)
@captainanxiety8

So I shared this on another forum, and people found it useful, so perhaps it might be useful here too. I've kept this journal for about two months now. I have tracked blood pressure, stool, the food I eat, the twitching symptoms, and sleep pattern. Here's what I've noticed:

1. If I get a minimum of 7 hours of sleep, without waking a single time during that sleep, then the following day I have barely any twitching at all, almost none. To achieve this I try to stop using all digital devices 2 hours before bed, I take Melatonin 6mg, I use a nasal strip, drink non-caffeine tea(I prefer Yogi Bedtime tea), and take an antacid.

2. If I wake up even once during the night, regardless of how deep I am sleeping, the following day is absolute twitching nightmare. Like today, I did not sleep well last night, woke up a few times briefly, and now today my right and left hand palms are twitching like crazy.

3. Any kind of dairy(cheese, milk, yoghurt, ice-cream, butter, even butter as an ingredient in cake), spicy food, beer(specifically, not wine or other things), if eaten any time after 7PM then I will have a hard time sleeping and the following day is an absolute nightmare.

4. B12, D, Multivitamins do absolutely nothing, and Multivitamins sometimes aggravate the situation.

5. Magnesium Glycinate might actually be helping. The occasions where I take it, and this is likely a coincidence, but shortly after I barely have any fasciculations at all. So far I have been taking 400mg - 600mg per day. From what I understand, it has to be specifically Magnesium Glycinate, not some mix of things or Glycinate + something else. I have met others who claim it has helped reduce their twitching by 80-85%.

6. Betablocker, not convinced it does anything at all.

7. If I eat dinner after 8PM then, again, sleep will be disturbed at least once and I will have a miserable day the next day.

8. I get about 4-5 days every month where I feel great and have almost no twitching, and those days almost always coincide with sleep being uninterrupted.

Those are the patterns I've found so far, at a glance and not looking deeply at the data I've collected. So I suspect(not confirmed) either:

A. I took exforge(Amlodipine and Valsartan) every morning for several years, and stopping it abruptly for half a year and starting again screwed up my body somehow. Or long term use of this drug did something to disrupt my metabolism.

B. My deviated septum got worse somehow and now my sleep is terrible, which, over time has resulted in fasciculations and sometimes pain. Or something else is going on in my body to cause poor sleep. Thus possibly sleep apnea is the cause.

C. I have subclinical hyperthyroidism with my TSH always at 0.45 or slightly below and T4 always near 19 or so. DNA test says I have a very high chance of thyroid cancer, despite having an ultrasound that says it is totally normal.

D. The many many "benign" kidney cysts I've got(something like 15+) have something to do with it, despite the specialist saying they are nothing to think about and cause no symptoms at all.

or

E. That I have some digestion issue and became lactose intolerant(I'm 40 years old now) and possibly intolerant to something else and this long term has resulted in BFS somehow.

That's what I've got so far. Would be curious if other people also started keeping a careful journal to see what they experience and compare.

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Mine came on one night after a big anxiety attack. Took ppi’s consistently for close to 15 years at least only about 5 before they started. Have had them 10+ years and still get concerned something worse is going on. Am honestly too scared to see a neuro due to cost as well as fear. L-Theanine and ashwanghanda seem to be helping.

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jeff87 | @jeff87 | Jan 10, 2023

Hey everyone, my twitching has not been as long as most of yours but it has me worried nonetheless. About two weeks ago I noticed some twitching in my forearm that lasted on and off for a few hours but went away. I've had spasms in muscles for over ten years that appear and then go on about their way in no time and attributed it to that. I believe that night as I was lying in bed I noticed my calf felt like crawling under my skin and my pinky toe twitches every few minutes. I paid no mind to it but after a week of twitching, I started to get concerned. I googled symptoms and saw the life changer diseases and began to freak out. I went to the doctor and had blood work done and everything came back normal. I'm currently waiting to see a neurologist. Needless to say, I am rattled.

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realshadowfax | @realshadowfax | Jan 12, 2023

DX with BFS on Dec 15 2022 BUT twitching increased
I complained about my weak legs to my PCP he referred me to an ortho who asked me to get a leg EMG in early Oct 2022. At the time of EMG my toenail finger was twitching and moving by itself.

EMG was clean so ortho didn’t help further, back to PCP he ordered blood test. I was b12 and D deficient. I started taking b12 and D but i started having twitching all over body including glutes, back thigh, calf, eye and lips.

Then i visited a neuro on Dec 15, she checked me for clinical weakness and reflex, said I had mild hyper reflexia for knee test. I was 5/5 on all tests she did. I told her about my fear of als and she said lets do emg, I didn’t tell her that i had done an emg before but just for leg.
She said i have bfs but for my relief will do emg.

Since then twitching has only increased and now I feel my right footwear is feeling lose. i don’t feel any weakness in legs, can squat run jump fine. In addition I developed tongue twitching.

I have another emg on feb 1 and now I am really worried

Question: is there such thing has emg done 3 months early in case als?

REPLY
2 replies
Moderator
Amanda Roe | @amandajro | Jan 15, 2023
In reply to @realshadowfax "DX with BFS on Dec 15 2022 BUT twitching increased I complained about my weak legs..." + (show)
@realshadowfax

DX with BFS on Dec 15 2022 BUT twitching increased
I complained about my weak legs to my PCP he referred me to an ortho who asked me to get a leg EMG in early Oct 2022. At the time of EMG my toenail finger was twitching and moving by itself.

EMG was clean so ortho didn’t help further, back to PCP he ordered blood test. I was b12 and D deficient. I started taking b12 and D but i started having twitching all over body including glutes, back thigh, calf, eye and lips.

Then i visited a neuro on Dec 15, she checked me for clinical weakness and reflex, said I had mild hyper reflexia for knee test. I was 5/5 on all tests she did. I told her about my fear of als and she said lets do emg, I didn’t tell her that i had done an emg before but just for leg.
She said i have bfs but for my relief will do emg.

Since then twitching has only increased and now I feel my right footwear is feeling lose. i don’t feel any weakness in legs, can squat run jump fine. In addition I developed tongue twitching.

I have another emg on feb 1 and now I am really worried

Question: is there such thing has emg done 3 months early in case als?

Jump to this post

Hello @realshadowfax and welcome to Mayo Clinic Connect. I found a discussion that I thought you would benefit joining so you will notice that I have moved your post here:
- Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

I did this to connect you with members such as @jeff87 @bigt20 and @alwaysanxious who have recently joined the discussion and who may have some information they can share with you.

I wonder if you have had your magnesium and potassium levels checked as part of your diagnostic process?

REPLY
Moderator
Amanda Roe | @amandajro | Jan 15, 2023

Hello @bigt20 and @jeff87 and welcome to Mayo Clinic Connect. Another new member @realshadowfax has also just joined and think it would be great if the three of you could connect and share notes on your respective experiences with your symptoms.

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