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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keithl56 | @keithl56 | 1 day ago

In reply to @avvol "I’m a little late to this thread, but I wanted to share my experience out of..." + (show)

@avvol

I’m a little late to this thread, but I wanted to share my experience out of empathy. This year has been an absolute medical curveball.

I turned 41 in October, and, humbly, less than a year ago, I was in elite shape. At 40, I ran a marathon in 2 hours and 40 minutes. But everything started to change after an inguinal hernia surgery in the spring. I began experiencing random twitching in various parts of my body—frequent enough to be distracting. By July, things had escalated. The twitching became more intense, and I started feeling seriously "off."

One morning, despite not feeling great (twitching, cold lower legs, nerve pain), I decided to swim in the pool, hoping exercise would help. That evening, everything fell apart. I could barely walk, and I was hit with a wave of neurological symptoms so severe I was bedbound for nearly three weeks. It was terrifying.

Since then, I’ve slowly recovered, but I still struggle daily. My main symptoms include:

Constant fasciculations: Especially in my calves, but they occur all over my body.
Nerve irritation and muscle discomfort: Mostly in my lower legs, hands, quads, and jaw.
Fatigue: My jaw weakness is particularly bothersome—it often signals that the other symptoms are about to flare up worse.
I’ve had extensive testing: EMG nerve and muscle studies, MRIs of my spine and brain. Shockingly, everything came back clean. I was convinced I had ALS or MS, but my neurologist reassured me there’s no sign of a neurological disease. He called my condition benign, though the symptoms are anything but. He plans to repeat the EMG in January to confirm.

As for treatment, I’ve tried several options:

Xanax: Helps calm my nerves, particularly in the afternoons.
Baclofen and Gabapentin: Provide some relief and help me sleep, but I still deal with uncomfortable symptoms daily.
Supplements and functional wellness: I’m working with a functional wellness doctor and taking various supplements, which has been part of my approach.
Therapy: I’m working with a therapist to address medical anxiety, which has been helpful.
I’ve started exercising again, but I’m nowhere near where I used to be. While I haven’t lost strength, my endurance is way down. If I push myself too hard, my symptoms flare up—it’s just not worth it.

Looking back, I suspect I pushed my body to its limit. Between marathon training, raising young boys, and traveling for work, I likely compromised my immune system. My neurologist believes something viral, like Epstein-Barr or mono, triggered this, affecting my nervous system. While he reassures me it’s benign, I still fear the possibility of a neurological disease.

On the bright side, this experience has taught me to slow down and focus on what truly matters. It’s even strengthened my 15-year marriage. For a while, when things were at their worst in August, my wife and I thought I was facing my mortality, which brought us closer together.

I’m considering a visit to the Mayo Clinic to see if they can provide additional insight. Selfishly, all I want is to feel normal again. This journey has been brutal, but I’m learning to manage it.

For anyone else going through something similar, I’m with you. It’s so frustrating to explain these kinds of symptoms—especially when you look fine on the outside but feel like a battle is raging inside.

Much love to everyone here, and I hope you all find relief.

Jump to this post

I can relate to the constant fasciculations. My calves and right thigh are non stop (my wife said it looks like an alien is crawling under my skin). Occasionally they extend to my biceps, hand, or torso. While not painful, the anxiety they cause is extreme resulting in loss of sleep as I lay there with my muscles randomly firing convinced that I have ALS.

My neurologist has ruled out all fasciculation causes except for ALS and BFS, and I am now waiting to be scheduled for a 3 limb EMG to get a definitive diagnosis. In the meantime, I feel like my life is on hold not knowing what the future looks like. The effects are not limited to myself, with the stress causing my wife to have ventricular tachycardia and saw a cardiologist for the first time last week and is herself now scheduled for a bevy of tests.

My dilemma (putting the cart before the horse) is what to do should I get the expected ALS diagnosis. My neurologist would send me to Penn for their ALS program since it is nearby to my Del. home. However, my house is a colonial and would be a nightmare to navigate when my mobility is compromised. On the other hand, we have a load of friends there which would provide a terrific support group for my wife.

My other home is on the beach in Hilton Head. I have a master suite on the first floor and an open floorplan which would permit me to function longer in my own house. I could enroll in the MUSC ALS program in Charleston or the ALS program at the Jacksonville Mayo. Either one is about 2 1/2 hours away. My wife would not have near the support group there, however. I find it much more peaceful in Hilton Head.

If it comes down to it, it will be a difficult choice.

I can't wait for the EMG's to be done so that I can move forward with my life, or what is left of it.

gerrieme | @gerrieme | 1 day ago

In reply to @fela0218 "Wow mine 3 years im 42. Atleast we have some comfort we are not alone." + (show)

Me too.
Neurologist thought related to hyponatremia
Low salt . But that's not it..
Salt level and all b vitamin magnesium and potassium fine.
Magnesium fizz seems to help get me to sleep. And tylenol for discomfort of twirling burning itching.
Now trying massage for legs.

avvol | @avvol | 7 hours ago

@keithl56 - quick suggestion, because waiting for tests is the absolute worst. When my doctor ordered an EMG, the hospital called me and said it would be 2 months before they had availability. I about broke - I couldn't wait that long. One of my doctor friends suggested I call around to various imaging places to see if they could squeeze me in sooner. I was able to find an imaging center and had my EMG done within 1.5 weeks versus 60 days. Learning how to navigate the healthcare system has helped me expedite certain things. You just have to press like crazy.

Good luck. Hopefully it is BFS and just fades away. If you haven't lost any strength (despite feeling weak with neuro symptoms) I'd say there's a fantastic chance you won't present any autoimmune disease. Prayers!!

keithl56 | @keithl56 | 6 hours ago

Thanks for the suggestion. I had already contacted Jefferson in Phil. and they told me Jan-Feb, same as my local neurologist. I'll look into other options. In the meantime, I'm starting therapy to help with balance/instability.

dbchip | @dbchip | 4 hours ago

I have had body wide Muscle twitching on and off for close to 20 years. Started in my early 40s. About 3 year ago I was diagnosed with (CIAP)Chronic Idiopathic Axonal PolyNeuropathy. They are not sure the connection with PN and the twitches. Said it was BFS. The key with MND is weakness. Twitching is secondary. Get your EMG-NCS done and you will have peace of mind.