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Old 09-24-2008, 08:41 PM #1
marias626 marias626 is offline
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Join Date: Sep 2008
Posts: 5
15 yr Member
marias626 marias626 is offline
New Member
 
Join Date: Sep 2008
Posts: 5
15 yr Member
Smile Having trouble navigating site and posting.

Hi there everyone,

Thanks to Redtail and Erin for the welcomes... I tried to reply to some of Erin's questions and don't know if it worked. So I will try here again. I was diagnosed in 2000, I am 42 and have 3 children. My youngest is 4. I was diagnosed at University of Michigan Medical center. I had onset of symptoms in 1991 when my oldest son was 5 months old. Generalised weakness, arms, legs, double vision, smile, chewing. Went to a neuro then and they said it was psychosomatic about a year later my symptoms subsided. I thought I was crazy. Then in 1998 when my mom got sick with cancer they started again BIGTIME. This time I went to U of M they thougth it was ALS or MS. A nurse there had MG and suggested an ACR anti-body test. It was positive at 538 the highest anyone there had ever seen. Thank God It seems to have spared my lungs in that while I might get short of breath on occasion I have never not been able to breathe. Luckily Mestinon worked for me right away. They still put me on prednisone but I blew up like a balloon and read about all of the side effects and stopped taking it after 6 months. They of course recommended a thymectomy which I opted not to do after a CT scan showed my thymus gland as normal. I have never had to have plasmapharesis and take it one day at a time. I think stress is a HUGE factor in severety of symptoms, and if I don't sleep enough ( at least 8 hours) I always have a bad day. Diet also sugar, salt junk food intensify my symptoms.
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