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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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So sorry to hear that you are going through all of this. . . very scary, especially when things start in on the breathing front. I have had to he hospitalized twice in the last two months for the same reason. The prednisone at 40mg every day with the mestinon just wasn't working for either.
I am concerned that perhaps your pulmonary doctor maybe not understanding the issue with the diaphragm weakness in MG?? I mean you really sound like you are struggling and when I got to that point the ER was where I needed to be. They did the respiratory tests like vital capacity and MIP and MEP every 4 hours and put me on oxygen to make sure I wasn't getting any worse and then they did start IVIG for 5 days and I was off of oxygen within 12 hours. It changed my life!! Also, sleep apnea is a huge issue in MG and maybe that is an issue if you are waking up like that?? They could check that too. I really would go to the ER if I were you . . .I hope you get some relief soon. Please let us know, debra |
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