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Old 01-20-2017, 01:50 PM
winic1 winic1 is offline
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Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
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yeah, it's that "good doctor" part that's scaring me. Almost no such thing around here. My ophthalmologist diagnosed me with MG more than FIVE YEARS ago, but without a positive AChR test, no one else would do anything about it (not even run a further test for MuSK or anything).

And, going back to when I first had clear, severe MG symptoms, it was SIXTEEN years ago, when I was pregnant with my daughter, but MG never even occurred to anyone, and I saw all kinds of specialists for all kinds of things as they tried to figure out what was wrong with me. It was so bad, by the time I microwaved my lunch and got it to a table, I was too weak to lift my arms and eat it. I would just sit there, arms hanging limp at my sides, staring at my food, until I recovered from the exertion of getting it warmed up. I could not stand and talk at the same time, if I was standing, I'd have to heave a giant breath between every two words ["Hey Boss {big gasp} Do you {big gasp} want me to {biiiiig gasp} include the {big gasp} chemical analysis {biiiiiiig gasp, twice} in the re-{nope, not gonna make it, gasp again} -port?"] That bad, if I was standing. Four to six words between breaths if sitting. And no one ever figured it out.

Hoping this new neurologist, who gave me the mestinon despite indicating she didn't think it would do anything, sticks with it now that it so clearly works. I think of it as my miracle pills. Ran into an acquaintance I hadn't talked to in months, she said she's seen me walking the dog and I look so much better than I used to! The nurse who took me down the hallway to the exam room at my gp asked, "I know it's been a while since I saw you, but are you walking better?" They see a couple hundred patients a day there! And she remembered me because I've been so pathetically shuffling along for so long.

"Good" and "Doctor" are two words you rarely put together around here.
Is why I'm afraid for my "miracle pills".
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"Thanks for this!" says:
AnnieB3 (02-28-2017), FREDH (02-18-2017)