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Old 08-24-2011, 05:00 PM
Nightcrawler Nightcrawler is offline
Junior Member
 
Join Date: Aug 2011
Posts: 26
10 yr Member
Nightcrawler Nightcrawler is offline
Junior Member
 
Join Date: Aug 2011
Posts: 26
10 yr Member
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I am going through the diagnosis, probable, possible, see another doctor, eye rolling, etc. that almost everyone that is seronegative goes through. But thought these memories might be interesting to people who are drumming up things from childhood. By the way, my aunt looked and acted very much like the woman in the Mary Walker clip and my father had MG diagnosed at age 80, my aunt, his sister, died at 42 and I believe she was untreated. I am 65, but here's what I remember from my childhood: at 4 I used my weak r eyelid to tell left from right and school pictures were a nightmare due to having one eye closed for many of the shots, I was extremely active and loved the out of doors, but always had scratches and scabs, especially on my elbows and knees, I was usually king of the mountain and hung by my knees from the merry go round but not fast or the best at jump rope and too stiff to do acrobatics for the first grade circus, I had no thirst, could play tennis all day in the summer without drinking and win, in swimming I was first across the pool if everyone was not allowed to kick and last if we couldn't use our arms, drove the swim instructor crazy and unlike my brothers, not fast enough for the swim team, played high school basketball for four years, shortest on team, handicapped by height, lack of speed, jumping ability, aim (left eye dominant, right handed). Was on the traveling team all four years, which did not mean I got to play, only that I was determined reliable and yelled loudly from the bench. It was the only sport for girls. I have been on pyridostigmine for less than a year which was like magic to begin with, but requiring more until I need more help than I can get without another work up scheduled for October. Maybe it's just as well, because I only recently realized that my problem could be CMS, although I am 65, and of course this is important for all blood relatives. Thanks for being here and bringing some of this research to our attention. Besides the seronegative testing, a lot of the eye rolling is because I am so strong and at the same time from the same office the diagnosis code reads lethargy, malaise, and fatigue. Hopefully this time someone will have some compassion and good sense! I am just as competitive as I was when I was a child, I am just losing.
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