Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 01-13-2012, 02:21 PM #20
Nightcrawler Nightcrawler is offline
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Join Date: Aug 2011
Posts: 26
10 yr Member
Nightcrawler Nightcrawler is offline
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Join Date: Aug 2011
Posts: 26
10 yr Member
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Quote:
Originally Posted by tperillo View Post
My most awesome friend, Aaron, shared your responses with me. I've been diagnosed with a mild case of MG and as Aaron mentioned, I'm trying to get Mestinon, life, work on track. The common thread amongst all of your extremely helpful posts is the importance of rest. You hear it so much: rest when you have a cold; catch up on rest over the weekend; rest when you feel overworked or stressed. It becomes just another word but I think for Myasthenics, it's THE MOST IMPORTANT WORD. Does anyone also suffer from headaches? My doctor feels that my frequent headaches are a result of my blurry vision and too much computer work. Just wondering if anyone out there has a similar symptom? Also, I have weakness in one arm and hand. Is this common?
I would like to comment that those of us who think/thought we have mild MG, because we haven't had a crisis yet, may have no idea about how much the disease is interfering in our lives. It sounds like you are progressing in your illness and Mestinon may not be enough, and something more may be necessary to treat the actual disease process. I don't know what your problem is with taking larger doses, I had horrid stomache ache to start with, but now up to 60 every 4 hours. But one thing I found was that chewing and not swallowing not only got into the system quicker, but bypassed the stomach ache. So if I have to take 60 without food now I take the first 30 under the tongue and the other 30 with water. (After a number of months, I could finally take 60 with food which prolongs the maximum blood level and enabled me to spread out the Mestinon to every four hours.) nc
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