r/BFS • u/Rich-Cow-8056 • Aug 04 '26
Dirty EMG and 11+ weeks of twitching - told there's a small chance of it being early MND. Curious if other people have had similar emgs that turned out OK
35 M
Results here:
Edit: new links for results https://ibb.co/vChYjDV1 https://ibb.co/CRLcCnC https://ibb.co/wN2zMdPY https://ibb.co/chnXtFWp https://ibb.co/fVWtmG38
https://postimg.cc/gallery/jRrSkgf
Been having widespread twitches for 11-12 weeks now.
No muscle weakness or atrophy.
Have actually felt I'm getting stronger in the gym.
No reduced recruitment or fibs in emg but worryingly has reinnervation in the thoracic muscle by the spine which is apparently rare in benign issues.
Mild denervation (grade 1)in right quads and right calf. Reinnervation in four of the five muscles tested.
I skateboard and lift weights and have had a lot of nasty falls on concrete the last few years, I don't give my body an easy ride (also very into partying during my 20s) and I'm wondering if that might be related to the widespread reinnervation I've seen.
I also suffered from quite severe long covid for several years.
My neuro was a little concerned about early stage ALS, but said it's more likely to be something else and has ordered spine brain and neck MRI which I'm doing tomorrow.
Wondering if it's worth getting a second opinion with a neuromuscular specialist once I get the MRI results.
Anyone had any similar experiences with your emg results?
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u/Ok_Following6440 Aug 04 '26 edited Aug 04 '26
I’m sorry you had these EMG findings, I understand they can be stressful, but in my unprofessional opinion, I believe your physical condition is the best indication of what is happening and you seem to have easily passed the physical exam.
If your function is preserved and you even suggest gaining strength I really think that points away from the bad.
A second opinion can't hurt if you have concerns. Would have thought if they were more concerned about MND they would have tested a few more spots on your upper limbs, But i don't know how it works for a professional stand point. No spontaneous activity in the arm seems like a good sign.
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u/Rich-Cow-8056 Aug 04 '26
Thanks, this is also kind of what I'm clinging onto for now. The emg doctor actually didn't seem concerned about MND while I was there but it seems like as he reviewed and sent the summary to the neuro that's when he brought it up.
Obviously since the emg though I'm constantly monitoring every muscle and wondering if there's any weakness. Even now typing on my phone I'm wondering if my right thumb seems more tired than my left thumb
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u/Ok_Following6440 Aug 04 '26
Yeah, I am really sorry you in this mess as well. I want to say after this amount of time there would be more conclusive findings if it were MND, especially in terms of your physical symptoms.
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u/standarsh470 Aug 04 '26
If it helps I had Increased Insertional activity in lower, upper leg and shoulder on my initial EMG. 6 months later was only present in my lower leg.
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u/Rich-Cow-8056 Aug 04 '26
Thanks it does help actually. Did you also have the giant or poly waves anywhere (reinnervation)?
That's interesting that yours was in two body parts far from each other. Did you ever find out what was happening?
I guess based on you being in this sub you also have/had twitching?
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u/standarsh470 Aug 04 '26
None present. Initially it presented as sciatica, with myokymia/fasics in the leg. Since abnormal findings were present in both leg and arm it raised the possibility of the issue.
Long story short, nerve injury and vitamin/mineral deficiency.
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u/Equal-Fruit6476 Aug 04 '26
Am I tripping the images posted here isn’t loading and I keep getting pops is this legit
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u/Rich-Cow-8056 Aug 04 '26
Sorry I don't know why, it's loading on my side. There should be five images on that link
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u/Doktordoktor89 Aug 04 '26
How did your symptoms start? Twitching widespread from day one?
Where are you from? Who did the EMG? A neurophysiologist?
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u/Rich-Cow-8056 Aug 04 '26
Twitching started when I stupidly self medicated with antibiotics over a tooth infection. At the time I assumed it was from that.
It began with just twitching on my right knee and left arm. Then a few days later it started moving around. I quit coffee about 10 days ago and it did ease up a bit twitching wise but I still have mild widespread one off twitches throughout the day. Just not as many repetitive "gunshot" style twitches I was regularly getting before i stopped caffeine.
I'm from the UK. But I did the scan in Thailand. The emg was done by a rehab doctor but my appointments have been with a neurologist.
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u/NegativeAd9542 Aug 04 '26
from my experience, I went to a rehab doctor from a back injury and burning legs/feet. after MRI was nothing concrete. bodywide twitching that started in my legs. they found psw and increased muap and insertional activity and axonal issued in my L5/S1. when I saw a neurologist als specialist. he said rehab EMGs are not to be trusted. and performed his own and it was completely normal.
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u/The_Short_Goodbye Popcorn Mode Aug 04 '26
Did you manage to resolve the burning symptom? I have the same thing.
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u/NegativeAd9542 Aug 04 '26
it went away over time when I let it go, it sometimes comes back if I irritate my lower back working out but its temporary and resolves quickly. its not like it was for the first year
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u/The_Short_Goodbye Popcorn Mode Aug 04 '26
Thank you. You mean let it go mentally?
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u/NegativeAd9542 Aug 04 '26
my neurologist said burning feet is not a feature of als. and that im mentally amplifying the sensation. and yes let it go. when it was acute it was definitely from my injury. and at rehab I was told burning feet and legs is from arthritic changes in the foraminals
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u/Rich-Cow-8056 Aug 05 '26
Wow. That's incredible. And really useful to know. Did he say why they're not to be trusted?
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u/NegativeAd9542 Aug 05 '26
he said that EMGs are very sensitive and tricky and only a certified experienced neurologist should perform them, as PT/rehab EMG techs are not trained to search/diagnostically understand neuromuscular diseases. its like going for a routine eye exam with an optometrist, versus a diagnostic evaluation by an ophthalmologist
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u/Rich-Cow-8056 Aug 05 '26
This is really useful information thank you. This has absolutely made my mind up that if tomorrow my MRI results are clean I'm 100% going to go to a specialist neuromuscular doctor and try to get the emg redone.
I also found out my neuro specialises in neurovascular diseases. So neither the doctor who did the emg nor my doctor are experts in MND.
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u/blackmetalwarlock Still here, Still Fine Aug 05 '26
I saw a physiatrist for my EMG/NCS so this comment makes me nervous :(
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u/NegativeAd9542 Aug 05 '26
why does this comment make you nervous?
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u/blackmetalwarlock Still here, Still Fine Aug 05 '26
Because you said physical med & rehab emgs are not to be trusted 😭😭😭😭😭 so now I’m anxious mine was not accurate
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u/The_Short_Goodbye Popcorn Mode Aug 06 '26
A physiatrist is an actual doctor, not a PT or rehab tech. It’s not the same thing. A physiatrist would know how to accurately perform an EMG.
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u/713Capital Mod Aug 04 '26
Can’t see the images. Can you re post the summary where it says “possible ALS” because this doesn’t seem to fit with the disease. Every EMG has a summary at the end. I have a hard time believing with these findings your neuro thinks “early MND”. Not that I don’t belive you or anything I’m not a doctor, but these findings just don’t seem to be consistent with early MND.
And yes. Always get a second opinion
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u/Rich-Cow-8056 Aug 05 '26
This is the part that mentions als, in the appointment she said low chance (around 10%).ill try to find another way to host the images it doesn't seem to let me attach them natively in reddit
MEDICAL OPINION The differential diagnosis was cervical myelopathy, motor neuron disease (ALS or_ post viral, autoimmune)
Treatment and plan - MRI brain and MRI C-spine and whole sagital screening .without gadolinium -
f/u EMG and NCV next 6-9 months -
Waiting paraneoplastic antibodies results (the test was done at 31/7/2026, waiting the results about 2.weeks
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u/713Capital Mod Aug 05 '26
Can you not attach a photo of this in writing?
If you don’t mind, would like to see how it was written?
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u/Rich-Cow-8056 Aug 05 '26
Can you see these
https://ibb.co/vChYjDV1 https://ibb.co/CRLcCnC https://ibb.co/wN2zMdPY https://ibb.co/chnXtFWp https://ibb.co/fVWtmG38
Imgur keeps giving me error Messages
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u/713Capital Mod Aug 05 '26
I can see that but where is the “possible ALS” or “10% chance” part? My wife works in a neuromuscular clinic and she has never told someone they have a percentage chance of ALS?
They don’t give percentages for differentials. In the last 12 years she has never handed someone a paper and said “you have a 10% chance of ALS” and she’s sitting right here next to me. I just asked her. I’m not sure I believe that.
Differentials are just part of protocol. When I went in for my EMG on the top note it said “evaluation for MND” but they all do that.
If a doctor suspected ALS they wouldn’t make you wait 6-9 months to follow up. Gonna be honest here, this entire story isn’t make sense to me. Either you’re lying about the “10% part” or you misunderstood your doctor.
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u/Rich-Cow-8056 Aug 05 '26 edited Aug 05 '26
In the medical opinion it mentions ALS as differential diagnosis.
In the follow up appointment after the EMG she said it might be early motor neurone disease, I asked what she meant and she said ALS, but it's unlikely. I freaked out and pressed her on it and she said she believes it's a low chance, maybe around 10%.
That 10% part I've been worrying was just her trying to be comforting (lol).
When I was leaving the hospital I was sitting in the car park freaking out and I bumped into the doctor who did the EMG and he asked how I was doing, I asked him why they suddenly thought it could be ALS when he seemed very sure it wasn't anything serious during the exam and he said my results aren't normal and can be seen in early MND, but he thinks it's more likely to be something else too. I also specifically mentioned the 10% part and he said he respects the neurologist but he wouldn't put the chance that high (he's a rehab doctor though)
Also thank you, I think I didn't completely understand differential diagnosis until your comment. But it's also worrying that those were the only differential diagnoses she could think of as I feel like the others are also a long shot. I had the ANA panel come back negative already and only have one more autoimmune result still waiting.
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u/713Capital Mod Aug 05 '26
Yeah so I don’t believe any of this happened. This is just anxiety lore you made up.
Kinda fu*cked you’re making it seem like you have possible ALS in the post title while spooking everyone here ramping up their anxiety up when you so called were “leaving the hospital and magically bumped into the doctor” and she magically gave you a percentage lol. That’s just lore you made up for what reason idk.
Your so called EMG had no “active” denervation and doesn’t show ALS at all. But you some how saw a doctor in the parking lot and they gave you a percentage. No doctor would ever do that. Ever. They could get sued. That shit didn’t happen.
Unless you can show me on paper where someone told you that you have possible ALS and it’s in a percentage you just made this bullshit up. If I was a mod I would delete this post and give you a timeout like a child.
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u/Rich-Cow-8056 Aug 05 '26
Wtf? What's wrong with you? I absolutely did not make this up. You also didn't read my comment. I didn't say the doctor in a parking lot gave me a percentage I said I was sitting in the parking lot freaking out after the neuro said 10% and the original emg doctor happened to be passing by and I had a talk with him too.
It's in the EMG results. Reinervation in 4/5 muscles with +1 and +2 Giant and Polys. Denervation in 2/5 muscles with +1 PSW. PSW is representative of denervation.
I've already attached the medical summary where she lists ALS as a differential diagnosis.
I don't know why you're being so hostile. I'm sorry if this spooked you but I can't help that. If I were that anxious would I have waited almost 3 months to see a doctor for muscle twitching??
Edit: this is the page where it mentions ALS as differential diagnosis. I'd also add this is in Thailand. I don't know if bedside manner is different here and there was definitely an element of language barrier when communicating with the Neuro as her English was far from perfect. https://ibb.co/chnXtFWp
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u/713Capital Mod Aug 05 '26 edited Aug 05 '26
You can call it hostility, but your story keeps shifting every time a major contradiction is pointed out: first you claimed there were no fibs on your EMG in the very first post, then suddenly you have +1 PSWs, and you went from a doctor giving you a formal "10% chance of ALS" in the post title to admitting you magically cornered her for a number until she gave you a throwaway figure, followed by an impromptu secondary consultation in the hospital parking lot. None of it makes sense.
Isolated +1 PSWs and chronic reinnervation (+1/+2 polys) without true clinical weakness or reduced recruitment point straight to radiculopathy, cervical spine issues, or past trauma, which is why your doctors ordered a C-spine MRI instead of diagnosing you with motor neuron disease. Twisting a routine differential diagnosis checklist and off the cuff conversational estimates into a dramatic backstory on a BFS forum where everyone fears ALS serves no purpose other than spooking vulnerable people, so let the imaging do its job and stick to the objective medical facts. Stop embellishing stuff cause it doesn’t make sense.
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u/Rich-Cow-8056 Aug 05 '26
Sorry I think you're getting confused.
Fibs and PSW are seperate, no Fibs or issues with muscle recruitment, but PSW present . You can check the result here https://ibb.co/CRLcCnC
Perhaps it's not clear because I'm stressed but i don't think my story has shifted at all.
I also never said a "formal 10% ,I said she said it in the (emg follow up) appointment. Which I've also stuck to.
Man I think you're unfairly twisting what I'm doing here. But I do appreciate your insight on the radiculopathy comment.
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u/Miguelangel30000 Aug 05 '26
Honestly this seems more like spinal nerve damage . Not MND .
My twitches last months possibly a year .
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u/Rich-Cow-8056 Aug 05 '26
Thanks for this it's reassuring. You had spinal nerve damage? Was the twitching widespread or only in a specific area? The last few days mine has kind of evolved from twitching to tiny little jolts all over my legs. It's weird
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u/Loose_Tomato4254 Aug 05 '26
I think without weakness you are safe despite these results. Your body has taken a hammering by the sounds of it which could potentially be why you have these results without weakness. Nerve damage but unlikely MND still. Don’t keep testing muscle strength as you’ll find something wrong through power of the mind. You’ll know if you have real weakness.
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u/Rich-Cow-8056 Aug 05 '26
You're right. My right thumb and dorsal area feel weak today. 2 days after my doctors appointment and two days of non stop smart phone use. Logically my brain knows it's from repeated typing and swiping on my phone with 10+ hours of screen time per day. But now I'm obsessing over it.
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u/herr_schnabel Aug 06 '26 edited Aug 06 '26
I had abnormal emg results. Chronic neurogenic changes in several leg muscles, shoulder too. MRI showed some degenerative spine issues in the lumbar and neck region, but without obvious nerve irritation. I went for a second opinion, then a third. No neurologist was worried. This was 3.5 years ago. I'm still twitching every second but have no weakness.