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notfue

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Hey all, my background is that I am a 57 year old man with no history of neurological disease in my family other than my mother has Alzheimer's.

For the last year or two, I've been experiencing weakness in my upper back. I've always been healthy and fit and when I go to the gym these days I just can't move the same weight I used to be able to. For example, I used to comfortably do repetitions with 135 lbs for lat pulldowns, but now I struggle with 90.

I had back surgery in my late 20's and which led to some nerve damage that has never healed, so my back has always been a bit weaker than it would have been in the ideal case.

I went to my doctor about this weakness I've been feeling, and he scheduled me with a neurologist. I had a spinal MRI, brain MRI, and an EMG. I don't have any of the papers to post here, but I was under the impression that everything was as expected, and my neurologist didn't see any reason to follow up. His opinion was that the weakness I'm feeling was probably a combination of my preexisting nerve damage, increasing age, other injuries compounding, etc.

I didn't even know what ALS was before some googling well after these appointments, so it was never something that I asked about. I know that with the MRIs his intention was to rule out things like MS, and I know that my EMG was not normal in the sense that he confirmed he saw nerve damage consistent with the damage I would have from that surgery way back when. So with that I have a couple questions.

1) Since my neurologist was going into these tests with the intention of ruling out diseases, is it safe to believe he would have been looking for ALS-specific findings on my EMG when he gave it to me?

2) Is the type of nerve damage obviously different in ALS vs the nerve damage I know I have? aka... would it have been easy to miss?

3) My daughter got me worried because she noticed some muscles in my hands and arms twitch a bit. I can remember having this type of twitching going quite a long way back, and I usually can't feel it. I didn't know that was also associated with ALS. Is twitching something that should worry me? (My daughter twitches a LOT and has a diagnosis of 'Benign Fasciculation Syndrome', if that makes any difference.

Thank you
 

Nikki J

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1 it doesn’t matter the reason an emg is done. They will see abnormalities and interpret them the same no matter what they were originally looking at.

2 there are many ways an emg can be abnormal. Yes old trauma or surgery looks different than ALS

3. Twitches mean nothing by themselves. A lot of completely healthy people twitch
 

notfue

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Thank you for your reply Nikki, if you dont mind me following up with another question:

1) Given that he ruled out MS and similar diseases, do you think it is safe to assume that if he DIDNT rule out ALS, he'd at least want to see me again? he said no follow up was necessary with him or any other neuro

I know this would be easily be resolved by going back in to see him, but frankly it is hard for me to find the time and money to see specialists because of my insurance

Thanks again,
Tom
 

Nikki J

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You had an emg. The doctor did not see ALS or you would have been told. If ALS was not mentioned at all the neuro probably did not mention it because neither your history or exam showed any reason to think of it. Whether you choose to follow up or not is up to you. If your emg was remotely questionable you would have been scheduled for follow up at the time
 

notfue

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Thank you again Nikki

I've just read so many unfortunate stories about people with other unrelated conditions (such as myself with my prior nerve damage) where things get missed because everything is sort of brushed off and explained by whatever it is they already had, although I admit I don't think most of them had gotten EMGs and the rest.

I just really wish I would've known more to ask my neuro at the time (or never read about ALS :\ )

I feel a bit better from your responses, so truly, thank you. Here's to hoping my weakness stays in the area I've had damage for damn near three decades
 
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