Hey Annmarie - tried to call you when we came back from our trip.....I am so glad that the EMG didn't show signs of als. I do wish it showed signs of what is happening. I really am not a good person to ask about how much weight I would put on it, because, as you know, my two EMG's have been clean, but my biopsy was consistent with polymyositis. My EMG's clearly should have shouted myopathy. The docs are baffled. My CPK's should have shouted muscle damage, but were normal. The docs are baffled. Unfortunately, there are atypical cases for all of these neuromuscular diseases and you happen to be one of them (as well as Jamie, Lou, me, Tom and a couple others).
I think we all have something that is probably simple, right under their nose, but we're scraping by it. My endocrinologist is the best. She said she won't just watch me deteriorate, she's scared they're missing something easy. Personally, I think all of us mentioned above are suffering some sort of myopathy, but which one is the problem....and the most important reason is why. Without fixing the why we will always have it or it will always come back after treatments.
You will, or maybe already are, have a big let down over this because you still don't have answers. But, please still be happy it didn't show the als signs. Love ya. Leslie