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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I have had MG since March 2007. The 1st neurologist didn't have a chance
since I was angry with the fact that I had MG. After trying mestinon, prednisone and azathioprine over a 3 week span, I advised the neurologist that I was tired of being a guinea pig, and I was not going to try anything else. He advised me that he no longer wanted to be my doctor. Of course I was my worst enemy at this time. I stopped taking anything, and went into crises and spent 2 weeks on a ventilator, ane another week in the hospital. I learned to accept the fact that I had MG, thus the 2nd neurologist had a better chance. We settled on mestinon (30 mg 2x daily) and prednisone (20 mg daily) All went well for about 2 years. At that time he stopped being able to practice at the hospital. I went to a 3rd neorologist. She tried stopping prednisone, and go to azathioprine. I discovered that she didn't have hospital priviledged. I never tried her suggestion. The 4th neurologist started out good. He sent me to Shands at the University of Florida. They only confirmed that I had Mg. Since then (2years) everything well with only 5mg prednisone every other day and 30mg mestinon 3 x daily. 3 months ago I started having weakness in chewing and neck muscles. At that time he upped the prednisone to 20 mg 3 x daily along with mestinon 60 mg 3 x daily, and started me on cellcept generic 250 mg 2 times daily. After 2 weeks, he increased to 500 mg 2 x daily. He advised me that I would probably develop osteprosis. He has indicated that it will be his way only. I want to be able have some input, however due to the 1st bad experience, I don't want to have another crisis. The way I understand cellcept is that it suppresses your imune system, thus making you secceptable to infections and many other side effects. As I read many posts on this site, I see that it can take up to 6 months for cellcept to work. Has anyone noticed a great Improvement anywhere up to the 6 month time, or has anything gotten worse? |
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