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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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Hi everyone! I am a newbie on the site. I have been diagnosed with MG since June 08.
My question is do any of you have respiratory fatigue that requires the 24/7 use of oxygen? I have heard people say that they have gone into a crisis and needed ventilation but never that they need oxygen all the time like me. I am 26 years old with a laundry list of medical problems but with Myasthenia Gravis it has knocked me right on my butt. I have tried Prednisone and the only thing that it did was make my heart race and make me gain 40lbs. I have also tried Cellcept but it made me dizzy like I was going to pass out. Mestinon works but I have to constantly change my doses since it can differ from months to weeks to days at a time. As you can probably can tell I am either really sensitive to medication or it just doesn't work at all. I also want to know if anyone has constant chest pains? My doctor has recommended a thymectomy but in a way I am scared since I don't heal correctly, keloids, and I worry about how the scar will look. I have previously had to have corrective surgery because of the scar tissue latching on to other things and causing problems, so I don't want to have to go through that again. Sorry for the long post. Thank you for reading and/or responding. Stephanie |
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