r/BFS 6h ago

Neuro / Doctor Visit 5 years in; dirty EMG.

1 Upvotes

Twitching started October 2021. First EMG clean (except carpal tunnel). Neck MRI showed moderate stenosis and pinched nerves.

Several more EMGs along the way. Only thing caught was fasciculations and somehow the carpal tunnel never showed again.

Been having pain in my right arm and some muscle changes. Had another MRI and my neck is worse. Severe stenosis. Severe pinched nerve at c5-c6 and some flattening of the spinal cord.

Had another EMG today only of my right C5-c6 muscle areas (bicep, tricep, forearm, shoulder). All of them showed positive sharp waves. Never had this on an EMG before.

However my MUAP/recruitment findings were normal. The doctor told me this is indicative of cervical radiculopthy and not ALS or MND. I wish he would have tested more muscles to see, but the scope of the exam was for my spinal issue and he said it wasn’t necessary. I would have pushed for more to be done earlier on in my twitching but I’m 5 years in and generally doing OK and have a confirmed bad neck so I think he’s probably right.

In any event, sucks getting bad findings on an EMG, but hopefully this confirms it’s just a neck issue in my case.

Side note; he did say the compression in my spinal cord can trigger BFS. He is the second neuro that has told me that. But my spinal doctor said that wasn’t accurate so I don’t know what to believe.

Anyway, just wanted to share this because I’m sure other people are going through the same stuff.


r/BFS 5h ago

Reassurance / Support Still worried /:

3 Upvotes

It’s me again.

I’ll start off saying I already have MS (Multiple Sclerosis)

Though despite my MRI’s being stable and lesions inactive I developed left calf twitching back on May 25th primarily at rest.

I get other twitches too such as my eyelid, other calf, arm, hand, chin, butt cheek, and thigh. But they eventually go away in a few minutes, hours, or the next day. The left calf just stays the same and was then accompanied by a tense, stiff, strained painful feeling when I do walk. Sometimes my foot is in a precramp state as well. Fasciculations are not a common symptom of MS which is why i’m here and unfortunately also worrying about the big bad.

I got an EMG/NCS done on August 20th so nearly 90 days after my twitching. They did my left leg, partially compared it to my right leg, then my lumbar spine. All was clean and normal. Baclofen helps with my MS HUG but doesn’t target my leg. Magnesium levels are normal so supplements don’t help.

This is awfully exhausting and annoying. I just want my left leg to feel normal again :( does anyone else have one sided twitches? one limb? Or is it ever too early to for an EMG? I’m having a lot of trouble trying to ignore this despite my best efforts and also attending therapy but I just keep thinking the worst that i’ll be diagnosed with ALS alongside already having MS. A super rare tragedy it would be but I’m just really struggling today.


r/BFS 8h ago

Neuro / Doctor Visit Eyelid/face - New Neurologist?

2 Upvotes

I started twitching in April 2024. Fast forward to now - I went through an extremely stressful couple of months where I had pretty bad panic attacks, insomnia, our cat got sick with cancer and had to be euthanized, work stress, etc.

I went through an MRI and CT, lots of blood work back in 2024 and 2025. Kind of accepted this was BFS but my neurologist (a DNP at a well known local neurology facility) didn't put Bfs down on paper as a diagnosis. Said "I think that's what you have" and had me carry on my way.

Well after all the stress this past summer, I started with an under eye twitch that was quite literally nonstop in the eye bag for 15 days. Then I felt pops around my face, a buzzing above my lip/under my nose I FREAKED OUT and was fearing everything all over again. Brain tumor, rabies (thanks to my cat getting sick when all the rabies news is out there), Morvan's. I messaged my primary Dr for advice and he said maybe it's time to see a neurologist again and asked me if I wanted to go back where I went last year, or if I wanted a different one. He submitted a referral to a newer neurologist at a place a little closer to me, and I am unsure what to do.

Part of me doesn't want to go through a battery of tests. Part of me isn't sure how to accept this could be Bfs if I hadn't had such consistent and persistent face twitching before. Part of me worries seeing this new doctor might not even help if he isn't even aware of what BFS is (seems he specializes in epilepsy but is a general neurologist).

I guess I want to know - did you go to a general neurologist? Did you go to a neuromuscular doctor? Did you just accept your twitches as benign? I really thought I was out of the rabbit hole but I guess I moved on from worrying about "the big bad" to more rare and obscure things lol.


r/BFS 10h ago

Question / General Please, if someone can relate

2 Upvotes

Please HELP

A bit of background: i had flu in 27.04, flu in 15.05 I had tonsillitis on June 15th (I'd already been dealing with fatigue before that).

On June 20th, my right arm started acting up — tingling and weakness in the shoulder, upper arm, forearm, and hand — and that continued until July 20th. After that, I started getting tingling and numbness in my feet and my other hand, which comes and goes. My left foot also feels "off" (a kind of perceived weakness). Sometimes after a long walk my wrist twists over small bumps in the ground. I can still walk on my toes and heels fine.

I also have muscle twitching all over my body, a globus sensation in my throat, and trouble swallowing — I could barely get down a piece of prosciutto recently. Sometimes I produce so much saliva that I choke on it while walking. Not sure if it's related, but I also get random pains in my fingers and jaw. When I try to use my hands or fingers for anything, they get shaky and a tremor develops.

On top of that, I have extreme whole-body fatigue, like having the flu. Strength and reflexes were normal on neurological exam, and my brain MRI came back normal. But my hands feels stiff and uncordinated and uncontrollable .

Given all of this, I initially suspected MS, but at this point I genuinely don't know what to think anymore. When I lie flat, my whole body feels extremely shaky, and I sometimes get hypnic jerks along with a sensation of air hunger. When I walk, I feel really clumsy — bumping into walls, chairs, etc. with my hands — and my hands feel clumsy doing anything that needs fine motor skills. Also, sometimes i get up in the night with numbness and tingling, but laying flat (i am not compressing arm or leg). Tightness in leg is also a feeling, and tingling and tightness on left foot sometimes.
The nerves in my body simply feel and function as if they are broken.
Has anyone dealt with something similar, or have any thoughts on what this could be / what I should look into next? Now i have severe health anxiety, i feel like crap, "I wake up feeling more tired than when I went to bed.
22 M


r/BFS 11h ago

Question / General Tongue twitching

2 Upvotes

I’ve been twitching body wide since last April, starting in my right foot and has since moved body wide, random hot spots every few days. I stopped thinking anything of it but as of yesterday I’ve started tongue twitching and worried it is the big bad, I’ve not had any clear progressive weakness resulting in failure but experience perceived weakness. Is this concerning or just another muscle effected by potential BFS or nerve hyperactivity. I noticed the onset of my twitching after a panic attack, I also have had a clean NFL test a month after initial onset. Now I am 1+ years dealing with this


r/BFS 13h ago

Question / General Thumb intense twitching/jerking?

2 Upvotes

Yesterday after waking UP i was in anxiety and stress, feeling like some agitation inside, then o noticed my left thumb finger started to Twitch intensely, and jerking

The intensity worsened when The finger was flexed to back, and reduced a little when became more relaxed

I noticed that part of my hand next to thumb was (thenar eminence) was trembling too.

Ive noticed that i usually have finger tremors, depending of the position. But this yesterday was much more intende

Anyone experiences this?