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Member
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Join Date: Oct 2006
Posts: 371
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Member
Join Date: Oct 2006
Posts: 371
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this is a question I think most of us have thought about, and turned over, and over again in our minds, and the not knowing which to take, and what to do can be very scary, and frustrating.
What can happen to you, depends on where you are with your MG. Some people will die with out their meds, as they'll keep going into a crisis, respirtory failure..etc.
Others can live life just on Mestinon. Many of us have to have a cocktail of meds to live, and are still struggling.
It's all so scary, I know. I really think, only you and your neuro can know which treatment you should take.
Imuran was awful for me, I became violently ill from it! Cellcept, I loved, I felt the difference right away, but it was shutting down my kidneys, so had to go off it. I was so sad to give it up.
I've been on Prednisone since I was first diagnosed, and hoping that someday, I'll be able to go off of it, but looking doubtful. I'm also on Cyclosporine, and a couple of other meds to help control this, but it really does change from person to person.
hence why, it's called the "snowflake" disease.
best of wishes
Love Lizzie
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