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Member
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Join Date: Aug 2010
Location: South Carolina
Posts: 714
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Member
Join Date: Aug 2010
Location: South Carolina
Posts: 714
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Something new-CMS plus MG
What a day. First I went for a IVIG treatment which was at 930 in the morning. I had a one o'clock appointment with my neurologist so we thought we had time to grab a bite to eat. When my treatment was done we were sort of pushed for time and my wife is not a good driver in heavy traffic. So she panicked and we went straight to my neurologist and we were just a few minutes early.
After about a one hour exam, he looked at me and said not only do you have generalized myasthenia gravis you also have congenital myasthenia syndrome usually called CMS. So now I have another problem to work on. So this would explain why some medications and treatments are not helping. He had a few breathing test done in the office which appeared to be okay. For my blood work they took 13 vials blood. He also sent me home with a device that I strap to my hand while I sleep to check my oxygen levels.
We were in the urologist office for four hours and finally got to eat about 5 PM. So we had a very long day and now have a new battle to look forward to.
Mike
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