Benign fasciculation syndrome (BFS)

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?

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My son is 20 years old and about 3 months ago, he starting having random headaches and twitches all around his body all day long.
He got a CT scan and an MRI of his brain and they both were fine. His headaches have stopped but his twitches continue. His twitches occur on his shoulders, arms, legs, knees, stomach, and, chest, they last for a few seconds and stop. He does not smoke, does not drink (alcohol or coffee) and does not seem to be stressed; however, he has been in quarantine since March.
He has many blood tests done, also his neurologist checked his strength, did a nerve conduction study and EMG and both were negative. After visiting different doctors, about 2 weeks ago, he was finally diagnosed with BFS.
His muscle on his left calf feels a little different (as if the muscle were tearing), he doesn’t feel any weakness and had some pain about 3 weeks ago, however, his pain has subsided. He got an ultra sound and an X ray of his leg and they were both fine. He is scheduled to have and MRI of his left next week.
His regular doctor recommended him to take vitamin D, magnesium and vitamin B12. He has been doing all that but nothing has changed.
To make it even worse, my younger son (17 years old) started having twitches all around his body about 3 weeks ago. He already got some blood work done and is scheduled to see a neurologist in 2 weeks.
I know the world situation with the Covid 19 (the quarantine, the confinement, the uncertainty of the virus) can make anyone anxious and can cause anxiety and stress to anyone, which I know could be a cause of these symptoms.
It is very bizarre to me that they have both developed the twitches. I don’t know what to do and would like to get an explanation!
As a mother, I am very concerned as my sons are very young.

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I'm so curious that this is happening to both of your sons. I'm also experiencing fasciculations that have been called benign due to stress, but I'm not really stressed (other than about these recent symptoms). It started right after Thanksgiving that my tongue felt like it was alternately burning and numb, then I managed to get Covid over Christmas (meaning I caught it sometime earlier in December). It was relatively mild, and just as the fever was breaking, I started feeling like my limbs were heavy. It went away after a week, but then the fasciculations started above my right knee, and then weakness to the point where I was hobbling around for about two weeks. During that time, the fasciculations spread to other parts of my body and they are still there. The weakness in my legs has almost gone, but oddly has moved from the front of my thighs (just above the knees) to the back of my thighs and calves, and it's turned into spasms instead.

The fasciculations are pretty much everywhere, but mostly in the knees, shoulders, biceps, back, and abs. During this time I went to several doctors, got MRIs for my head, cervical, thoracic, and lumbar spine, and EMG/NCS. All were negative, which I'm told definitely rules out MS and MND (i.e., ALS, etc.). My tongue however has started to feel weak in addition to the numbness and burning. I have no idea if that's related or not, but it seemed to happen in close proximity to the fasciculations and other weakness.

I also, just anecdotally, got fasciculations when I got the Covid vaccine and boosters. Just for a few days up to a week, I would say. Didn't think much of it until this (fasciculations and weakness) started happening.

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Hi @johnbishop, thanks for the response. I'm a very conflicted person. I am a scientist that works in drug development so on the one hand I understand the biology and all of the nuances of high consequence disease (which is a blessing and a curse). On the other hand, I am a pessimist, suffer from somatic symptom disorder, and in general I am a "miserable bugger." Overcoming my cynical attitude to some of the items below was the first step.

I have not received a medical diagnosis of BFS as it is too early in my journey with these symptoms. The NCV/EMG test results certainly were reassuring. I work with a therapist on how to control my pessimistic outlook on health (and she has been instrumental in helping me overcome my cynicism.) However, for the last 3 months I have really committed to mindfulness, managing anxiety, and using CBT to bring rational thought to my emotional reactions to somatic sensations. they are not 100% effective, but these practices help a lot.

One of my key learnings is related to the aging process: our bodies change constantly and will experience "different" sensations as we age. While some sensations are worrisome (and, as I stated previously, should be professional evaluated and monitored) not all "different" sensations are ominous signs. Understanding that we need to do things to make ourselves feel better is important. These can be physical, emotional, and/or educational in nature. Finding what works for you is key and is likely going to be somewhat unique.

Most importantly, dealing with these things from an enlightened position has been most helpful for me. Specifically, reading factual information, speaking to experts, and getting advice from reliable sources is essential. Avoiding the sensationalism in the world is important. It certainly is easier to worry and fret (and I still do my fair share of that) but recognizing that those thoughts are happening, acknowledging I am having those thoughts, talking through the rational facts, and regaining a sense of control is very rewarding in my case. I still feel the twitches, fatigue, etc., but my anxiety is less when I employ these approaches.

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When a condition is linked to stress because the doctor is not familiar with the symptoms, it reminds me of the time decades ago when women were diagnosed with hysteria for just about everything that was not understood at the time. Stress has taken it’s place. I’m not downplaying the role of stress as a cause for many conditions, but it bothers me that people like you and I and countless others who have benign fasciculation are given drugs like Xanax to control our symptoms. As far as I know there has been no research on BF so until the medical establishment directs funding towards the study of its causes, we are guinea pigs.

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I’m a recently retired 22 year USMC veteran and over the past year have developed some strange symptoms. I get intermittent fasciculations from head to toe, some days worse than others, some muscles worse than others, just depends on the day. I also randomly get this burning itching feeling from head to toe that comes and goes. Other occasional symptoms are intermittent eye and head aches, muscle and joint pain… again… all intermittent.
I have seen a Neurologist and have had MRI’s of both brain and upper spine and they also performed an EMG on my upper extremities. No daunting abnormalities with the only findings in MRI were mild spinal stenosis (I was a Marine for 22 years, so not surprised) and EMG revealed ulnar nerve neuropathy (again, not surprised) after 22 years of beating up my body. All symptoms come and go with some days increasing in intensity and some days I am rather normal. I also get some numbness and tightness in my face and lips, seems to cause me to talk goofy at times. I have no noticeable weakness other than sometimes my muscles feel tired (my guess is from muscle twitching) but I don’t stumble or drop things. I also get random racing heart and my BP bounces all over the place.

I am following up with a new Neurologist at the end of the month to see if they have anything to tell me or prescribe me so we shall see. Anyone else have similar issues?

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