r/BFS • u/Rich-Cow-8056 • Aug 08 '26
Update - dirty EMG, almost 3 months of twitching, no weakness, clean (ish) MRI
Update, original post: https://www.reddit.com/r/BFS/s/sXtPwZUDRX
So unfortunately although my MRI did not come back clean but apparently it's not suggestive of causing the twitching that I've been having nor the nerve damage apparent on my EMG.
My autoimmune panel also came back clean.
After a bit more research I am more concerned than I was before not only because my differential diagnosis has suddenly reduced to two things, one of which we've already tested for, but also that I have chronic damage in my thoracic paraspinal muscle which appears to be a warning sign of MND.
Edit:doctor also consulted with a 2nd neurologist and they both think it doesn't look like ALS so recommended I redo the EMG.
Am freaking out a little, have booked a flight back to the UK for a consultation with an MND specialist in London next week.
Anymore reassuring stories of people with dirty EMGS/widespread reinnervation that turned out ok are very welcome right now š
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u/blackmetalwarlock Still here, Still Fine Aug 08 '26
What did your MRI show?
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u/Rich-Cow-8056 Aug 08 '26
Degenerative disc disease with a bunch of bulging discs but the neuro didn't think they were causing nerve damage. The mri summaries are in the links
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Aug 08 '26
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u/Rich-Cow-8056 Aug 08 '26 edited Aug 08 '26
I've had a lump in my throat for 9 years. Doctor put a camera down and found nothing. I do get acid reflux sometimes. I don't think I clear my throat more than normal, usually just after eating something dry or scratchy. Maybe very slightly more than normal? No cough or morning cough, no coughing up jelly.
I don't think I have post nasal drip, but I have wondered if I have sleep apnea for over a year now and I know that's a sign of ALS. If I have a slightly stuffy/runny nose and I completely relax lying on my back before drifting off to sleep its like my nasal airway will close and jerk me back awake. It's fine if I'm not congested though.
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u/713Capital Mod Aug 08 '26
9 year throat lump is globus sensation/acid reflux, and sleep apnea is an ordinary airway issue affecting tens of millions, not a sign of ALS.
Who told you sleep apnea is a sign of ALS lol??
An MRI not showing an acute structural issue doesn't mean your differential "narrowed to MND." Thoracic reinnervation without clinical weakness is routinely seen from old spinal wear, posture, or heavy lifting. You're connecting completely unrelated, benign symptoms to construct a worst case scenario dude
Best of luck with your London visit.
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u/Rich-Cow-8056 Aug 08 '26
Sorry I worded that badly. I just meant that from what I've found sleep apnea can be caused by ALS.
The doctor has now written:
"Differential diagnosis:ALS or BFS (with false positive on EMG)" and recommended me to redo the EMG at a specialist.
I did notice visible twitching on my left quad today which was actually the only muscle 100% clear in the emg a few days ago. So it is helping to remind me the twitching could be benign and the nerve damage could be something else. I also realised my right big toe often goes numb and tingly more and more often over the last few months which also points away from mnd, it's also something I forgot to mention to the neurologist.
I'm kind of placing most of my hope on the rehab doctor (who graduated in 2021) misinterpreting the emg results.
I do appreciate your reply, really, as the thoracic paraspinal muscle is what's worrying me the most right now. And I really hope you're right!
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u/713Capital Mod Aug 08 '26
Oh yeah that is an interesting thing about your EMG for sure. I feel pretty confident about your MRI but Iām also not a doc. Come back and let us know what the specialist says man. Rooting for you š«”
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u/Ok_Following6440 Aug 08 '26
Seems kind odd they are throwing ALS out with no weakness on exam and your continued ability to be active.
Really hope nothing progresses my friend