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Member
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Join Date: Oct 2006
Posts: 371
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Member
Join Date: Oct 2006
Posts: 371
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Hi, and welcome.
Before treatment, i use to get this thing, where it was as if my body forgot how to swallow. I literally had to think it through, like, okay, roll tongue against roof of mouth, and I literally had to take it one step at a time. I had no idea what was going on. It is the worst feeling! One morning, I awoke, and my coffee cup felt like a lead weight.
I've since had double vision, legs give out and many other unwanted symptoms.
Your blood work can come back normal, and you still have MG. As a matter of fact, all your tests can come back normal and you still have MG.
Mestinon can help, but I've heard of many who it did nothing for them. It does help me, but I'm also on Prednisone, Cyclosporine, Provigil for the fatique, but I also have Narcolepsy.
Soft foods are the only way during these times. And it really is different for each individual. Some have a constant battle, some every few months, some will have relief from the swallowing, but have a constant battle with legs, breathing, arms weakening. I don't have too much trouble with swallowing anymore, but I get generalized weakness, and my breathing is awful.
Keep pushing for answers, and see if you can get to an MG specialist, neuromuscular specialist, or call the MDA and ask for a reference.
Best of Wishes
Lizzie
P.S. i was diagnosed through a Tensilon test. You may want to ask about it and the Single fiber EMG
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