Grand Magnate
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Join Date: Feb 2009
Posts: 3,306
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Grand Magnate
Join Date: Feb 2009
Posts: 3,306
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Hi. First, let me clarify something. You have been diagnosed with a congenital myasthenic syndrome and NOT myasthenia gravis?
If you have CMS and not MG, then the doctors have not treated it appropriately. CMS is a genetic disorder. It is NOT an autoimmune disorder. None of the syndromes can be helped by Prednisone, Cellcept or other immunosuppressants, or IVIG.
And not all of the syndromes have the same treatment. Some of them are situations where there is too much acetylcholine. Some people have insufficient acetylcholine and some have none.
No one here can "prescribe" anything and really can't recommend any treatment! You need to see a doctor to do that. And if you are from India, they have centers that use alternative medicine.
Since you are having moderate weakness, you need to see a doctor right away.
Annie
Last edited by AnnieB3; 03-21-2014 at 05:45 PM.
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