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Old 12-28-2012, 01:34 PM   #4
Join Date: Aug 2012
Posts: 9
bny806 HB User
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 improved greatly, while other parts seem to be progressing... It is a struggle to keep my weight up, as I also have GI components to this too.. and visual ones .. The thing that is freaking me out the most right now is that at night I feel like I'm not breathing very deeply.. I do wake up with a mild headache - not bad, but it's there, So i know I need to go do a sleep study, but i'm afraid..
What treatments have you tried? What are they telling you? do they think its autoimmune or something? My tongue sounds exactly like yours.. I had another EMG/NCV a month or so ago, and it was normal - they said no ALS for sure... but i still fear that or something terminal. I Have two small children under 3 , I am terrified..
Have they done muscle biopsies etc? Are you still able to work, and do everything, or do you just have bad muscle fatigue? Can you swallow foods and speak ok? When my sypmptoms are bad, I can barely swallow food or water, have slurred speech, breathing and walking and well everything is really hard... ugh...

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