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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-08-2010, 09:09 PM
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Senior Member
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Hello everyone!
 Been gone for a while now due to illness/stress and will prolly be off for a while......needless to say it has been a crazy month or so..... I love my neuro, but have been going downhill for a while so I went to see a new one who told me I would prolly be too "complicated" a case for her and she wants to send me to a neuro's neuro here in SA. Bad scare with left breast - biopsy came out NEGATIVE but they kept the clamp in for future reference and I need to go in every 6 months from here on out to get it checked out  Edema still driving me CRAZY! I'm gaining about 7-14 lbs @ this point and have had doppler tests, lab work, etc to rule out the problem. Saw my internist who swore up and down it was heart related so I went in for a test on my heart - thank God it turned out OK!  3 fractures all told at this point - spine, hip and ankle, though the pain has FINALLY been manageable I'm going in for more IV IG next week - FINALLY! I have been BEGGING for IV IG, but Dr. I was concerned that it was the cause of my back pain - NO (!) it was the steroids that were making them brittle and weak........... Finally OFF the cyclosporine! It was awful! The IV IG should pep me up and give me energy! Just love the stuff! Plasma exchange is just too hard on me..... I'm heading to the Mayo on the 25th! Yippee! I've also been told that one of the "top" people for MG is here in Texas - Houston to be exact, so I'm going to head over there when I get back......just want some of my energy back! Had a GREAT xmas! It was so much fun seeing all of the little ones running around! We had it here so I could climb in to bed when I was tired! THe house looked great due to my aunt who came down and helped decorate. IT was wonderful! How are all of YOU feeling? I've missed you all soooo much! Love, ERin
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Erin . |
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