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pleasehelp

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Hello.

Thank-you all for taking the time to read this. I've posted on here before over the past year or so (I think that's the timeframe) but noticed that my threads have been closed so have started a new thread. I hope that is okay. Very briefly, I have a history of some symptoms that look like ALS (actual clinical weakness, atrophy, altered reflexes) but other signs that give me hope. I have had trouble balancing and I can't run properly - it feels like a weird gait - BUT I can walk around and hop up and down etc. Climbing stairs is so very difficult, but, I can still do it. I have trouble swallowing food, but not liquids? I twitch, but go periods without any twitching. Etc.

On to what really matters here - opinions of medical staff. Various other conditions are now ruled out thanks to MRIs and I've been referred on yet again to another specialist (a neurologist). I've been told ALS is on the cards. I'd been assuming that I was being overly anxious and I don't have ALS, primarily because there are a lot of sensory symptoms and I hear that ALS is 'failing not feeling'. Additionally, the atrophy doesn't appear to have progressed far recently. Limb symptoms are pretty much as they were several months ago although bulbar ones are worse. Wouldn't my limb symptoms be getting worse if it was ALS?

I'm a little shocked to hear that this is what they're looking for, despite my initial concerns. Am I correct in my understanding that the MRIs etc are to rule out other conditions but it is the EMG that suggests ALS and if you get a consistent pattern they perform further tests? I can't say my current specialist was that helpful and now have an anxious wait ahead for the next specialist. Any info on what happens next will be greatly appreciated. He just said I have to wait to see the next specialist and wouldn't say much more, just squirmed uncomfortably in his seat talking about it.

Thank you so much for taking the time to read.
 

lgelb

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Hi, Brisbane, sorry to hear ALS is a possibility. It is a diagnosis of exclusion but one that is strongly suggested by the EMG. Before or after, blood work for certain and possibly a spinal tap or muscle biopsy could be done to rule out other causes of the abnormalities the EMG shows.

There is no set pattern of limb vs. bulbar progression, and they don't usually track each other closely, so the lack of limb progression vs. faster progression of bulbar symptoms does not tell the tale either way.

Is an EMG scheduled or do you have to see the neuro first?

Best,
Laurie
 
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