I just joined this support group today and it is good to know that my Mom and I are not the only ones going through this and there are folks out there that can relate and offer real world advice from their own experiences. My Mom was just diagnosed with MG officially about 3 weeks ago. She has had symptoms of MG for about 2+ years, but we did not know that is what was causing all of her weakness and problems with her eyes. She has been in MG crisis 3 times in the last year, but we did not know that is what it was. The scariest part about it was that she was hooked up to all the monitors in the ER and everything looked normal, yet she was gasping for air and trying to convey to the doctors that she could not breath, and they would just tell her she was fine and that it was all in her head. They eventually gave her oxygen and she did not lose consciousness or anything. (Has anyone else experienced this) Not knowing anything about MG, I sided with the doctors, figuring they know more than I did. Boy do I feel stupid now. We got a pseudo diagnosis from her primary care doctor about 6 months ago and have been trying to get to a neurologist for confirmation and treatment. We were finally able to get in 3 weeks ago and were so excited about beginning treatment. They started her on 10 mg of prednisone and 60 mg of mestinon 3 x per day. Within 10 days we were in the ER and she was in MG crisis. They pumped her up with 125 mg of prednisone which initially seemed to help. They also changed her mestinon to 30 mg 4 x a day. She got out of the hospital just last Friday and was doing better for a couple of days and is now back in the hospital for the same reasons. As a caregiver, it is so frustrating not knowing how to help her. I feel extremely helpless and I am doing all I can to educate myself on this disease so I can be an advocate for her. I have found out very quickly that most regular docs do not have a clue about this disease and you have to educate them. The neurologist have been the most helpful, but we are on a roller coaster ride to figure out what treatment is going to work. Any words of advice are greatly appreciated.
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