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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-26-2010, 12:22 PM
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What you describe is what happens to me as well. I too use to love to hike, bike ride, and lawn/gardening. I mean, I use to low, absolutely loved to do yard work, mowing, raking, all that stuff. But can't any longer.
I do think you should call your doctor and discuss this with them. Or if you go to a MDA clinic, you can tell your MDA counselor,and she'll relay it to your doctors assistant, or to the Doctor. I know, mine is really good at getting the messages or concerns exactly the way I tell her. And I was curious about the Timespan. I haven't used Timespan, but I have to take a Mestinon before I go to sleep at night, other wise I awake to not being able to breathe. It was my understanding that Timespan was not to be split in half or anything like that, as it was a slow release med. Unless it's changed since last I read up on it. So, you may want to ask about that, just in case, or read up on it. My heart breaks that you have to go through all this. I remember being in the beginning of it all, and it was sooo frustrating. It still is at times, but not like the first few years. Let us know about the Timespan, and how you're doing. Hang in there, you'll get better at discerning your body's needs. best of wishes to you  Love Lizzie P.S. Prednisone shouldn't never take 9 months to kick in, it's usually with in weeks. I felt it with in the first week, it's fast acting this is why they usually prescribe it right away. Could it be that you need a stronger dose? |
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