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beanie

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Joined
Jul 19, 2006
Messages
6
Reason
PALS
Country
US
State
MA
City
Boston
Well in two days I go for yet another EMG...this time limited EMG but trying to see if there is a change in denervation. As I said before, I am 27 years old and already had cerebral palsy when I was given diagnosis of ALS last year but since have had another doctor who would not confirm that diagnosis....in the meantime I am down 30 pounds, taking only supplements no solid food and just trying to get through each day with the progressive weakness.

The thing that makes me the most frustrated is that without "official" diagnosis of ALS, this prevents me from getting into ALS clinic but I love the local neurologist I have anyway, also wanted to check into any new drug trials but there again no official diagnosis. I have been taking Rilutek for the past year, but reading alot on this site about CoQ10, is that something I might want to start?

Well here's hoping to finding out something "for sure" in a couple days! Sometimes the unknown is the hardest to handle, as I have had a year of dealing with all my symptoms so if they would PLEASE just put a label on it! They say they are hesitant to make this diagnosis because of CP but I have had that for 27 years with absolutely no change and anyone who knows cerebral palsy, knows it wont change, but we will see what Wednesday brings....thanks for listening.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Good luck beanie. Let us know what happens.
 
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