Dignify

Hello! I’m so very sorry to hear of your diagnosis. I just have a quick question if you don’t mind. I actually live about an hour and a half south if you in Dayton. I was just wondering who you saw at OSU and if you’ve had a good experience there? I have an appointment there mid April (I’ve had to wait 5 months for the appointment) with Dr. Stino. In the past, I went to the Cleveland clinic and had a horrible experience there so I am hoping this one will go better. Thank you for any insight you might have!

Denervation/reinnervation, had one fib which was representative of carpal tunnel. With the atrophy and weakness I am experiencing on left arm(shoulder, bicep, tricep, forearm and thumb) and the global fasciculations my neuro believes I am early stages als. But given I have had the fasciculations for so long he says I am a unique case. As far as the cramps go, the start of them was year and a half ago about the same time the weakness started. I am still not really sure if I have the full blown diagnosis of ALS, but the last thing he told me was "what else could it be". Whatever it is it seems to be progressing slower than the classic als. I do a lot muscle strength tests on my own with weights and am noticing a slow steady decline. So I will keep my fingers crossed that I plateau at some point. Hope all is still well your way, take care.

Hey mate, what was abnormal with your EMG? When you started twitching globally, how long til you noticed weakness/other symptoms or did the twitching globally start with other symptoms. Did your twitching ever start in one muscle and stop for days (even if you still twitched randomly all over in the days that this muscle stopped) or did they never stop overall once they started? Did your cramps start with the twitching or came much later?
So sorry to hear what you are going through. I really hope you don't have it, as your case doesn't sound typical at all. So far no new symptoms for me, just widespread twitching.

Hey Nathan, did you ever get confirmation on what was wrong? Was it indeed ALS?
Your overall presentation sounds similar to mine, but I don't have diagnosis yet.
Hope all is well.