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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-18-2020, 10:18 PM | #1 | ||
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Grand Magnate
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I hope everyone is doing well. Me? Not so much.
Besides caring for my mom, who had to go into a nursing home in 2016, I have had a bunch of new things come up due to insufficiently treated MG. My MG has become worse. Due to that, I have had hypoxia at night for who knows how long now. I have O2 every night, which helps. But I also have "unidentified bright objects" or UBOs (like UFOs—lol) in my brain (brain damage). I have pulmonary hypertension, which might get better with oxygen. Hypoxia causes PH. So, if your MG is not doing well, please have a sleep study or an overnight oximetry. Hypoxia can damage tissues all over the body. And if your breathing is worse, don't assume MG is causing that. See a cardiologist. If any of you do need oxygen at night, just know that you are at the mercy of a previous owner of an oxygen concentrator. Medicare and other insurance companies only rent them. I can't deal with smells, etc. so I was forced to buy a new one. Glad I did. I missed you guys. Life has just been nonstop shtf. Annie Last edited by AnnieB3; 03-18-2020 at 10:59 PM. |
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03-19-2020, 10:10 PM | #2 | ||
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Junior Member
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Annie,
Missed you. Sorry to hear about all of your issues. Good luck with the generic Mestinon. Jim |
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03-22-2020, 10:19 PM | #3 | ||
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Member
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Wondered what had suddenly taken you away. So sorry to hear of the troubles. Glad you are back.
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04-17-2020, 09:58 AM | #4 | ||
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Junior Member
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I hoped you were doing ok.
Sorry to hear about your breathing and glad that the UBOs have not prevented you from writing. |
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11-17-2020, 01:29 PM | #5 | ||
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Member
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Wonderful to read your post. Medical staff tried to put me in hospital 2x in last month. First it was internist but I said I wanted my city cardiologist to decide as she believes in my MG and knows I am way under treated. She said my EKG was fine. Then it was the thorough nurse at ask a nurse who sent an ambulance for me about 2 weeks later. On top of MG I have pleurisy I think and new bloodwork pointing to Lupus. It is a Godsend to talk with anyone who really gets MG breathing. So thank you Annie.
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12-24-2020, 12:05 PM | #6 | ||
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Junior Member
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Glad you are back, sorry to hear about your struggles
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