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Board: Muscular Dystrophy 12-29-2012, 02:28 AM
Replies: 18
Views: 4,221
Posted By bny806
Re: Losing muscle mass in tongue, tonsils normal?

I hear ya ... I was told it could be "stress" at first... I saw about 4 or 5 different neuros before I ended up at the university ALS center.. They all told me along the way it sounded like GBS/CIDP...
Board: Muscular Dystrophy 12-29-2012, 01:00 AM
Replies: 18
Views: 4,221
Posted By bny806
Re: Losing muscle mass in tongue, tonsils normal?

They don't have a firm diagnosis.. it was more that I was declining so fast they thought they would try it.. and they thought I sounded like Guillian Barre/CIDP, however my emgs were all normal. ...
Board: Muscular Dystrophy 12-28-2012, 12:34 PM
Replies: 18
Views: 4,221
Posted By bny806
Re: Losing muscle mass in tongue, tonsils normal?

I'm so sorry your still struggling.. So am I... any answers or changes since your last post?? My atrophy seems to have slowed down since IVIG.... which i get every 2 weeks.. parts of me have...
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