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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-12-2011, 03:57 AM | #11 | ||
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09-12-2011, 11:47 AM | #12 | ||
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Myasthenickids.org is a great site for answers to that question and many others. It is clearly written and once you "get it" you can understand some of the rigamarole of the scientific journals. It was posted on another site and once we get to our "quota" here we can begin to communicate better.
I have MG that I suspect is CMS. I am seronegative for antibodies and my father and his sister had MG. I have been symptomatic for many years, but only recently on treatment (pyridostigmine) which has worked like magic, with some side effects. Some people with CMS do not respond to that treatment, but whether mine is due to unrecognized antibodies or is CMS, I do. I have an appointment in October at Vanderbilt in Nashville, TN where they have neuromuscular specialists, including some whose special interest is CMS. I have great hopes (once again) for a firm diagnosis, so we can proceed with trying to get me back to the place where my muscles sometimes tell me I ought to be. I exercise (gardening and Tai Chi) as much as I can and on meds, I am beginning to have some atrophy reversed, which is not helpful when you are seeing one of those neurologists that looks at the negative blood tests and the person who is stronger than he and rolls his eyes (figuratively so far). But it tells me what I have been suspecting for years, that I am neither lazy nor crazy, but my muscles are sick. Nightcrawler |
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01-03-2012, 06:58 AM | #13 | ||
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Hello just replying to your post I am 22 years old and I was diagnosed with cmg at age 3, if you would like to talk please email me. I am currently live in western Australia, and it is really hard to find someone to talk to with our contition. Look forward to you reply.
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04-22-2012, 10:46 PM | #14 | ||
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please feel free to text back. |
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