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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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Well Here is My Story:
Mine is a little backwards from what I've read thus far. Last May, I was diagnosed with a thymoma (malignant). Had it removed (through the side) and went through radation and the whole nine. I thought all was well. Until about a month ago, I started talking strange. And later, had a hard time breathing at night. Then, I couldnt eat. I thought I had an allergic reaction to something and went to the ER because my breathing was getting worse. After tons of tests, I was diagnosed with MG. I started Mestinon (60 mg 3x/day) two weeks ago and Prednisone (40mg daily) one week ago. I dont have a hard time breathing anymore. Prior to prednisone, I hadnt sleep in 2 weeks and could barely swallow water. I am sleeping but my speech is still grossly slurred and I am not eating any solid foods. I am currently stuck to Ensure's and yogurt. I am a mother of a very active 5 year old boy who just started school. I feel frustrated because I cannot talk to his teachers. This is hard for me because I am very educated and quite independent. I know that everyone is different so answers/opinions are not going to specific to me... but I would like any input you all have to offer. I've asked doctors similar questions but I want opinions of those who live with this day in and out. *Are you optimistic about improvement? * How long did it take you to see results once you started taking action toward MG? Which and dosage please. * Is your speech impaired? * Did you have your thymus removed? Plan on removing it? Do you believe this helps with less symptoms? * Do you have children? If so, Are you working regularly? * What should I expect? I know this question is kind of silly but after reading horror stories I just want to know the reality. Any advice, encouragement, warning signs, etc would be greatly appreciated. I am very thankful to find people here with similar struggles. ![]() |
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