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Old 03-18-2020, 10:18 PM #1
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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Heart Been away a long time.

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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Old 03-19-2020, 10:10 PM #2
JimInMI JimInMI is offline
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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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Old 03-22-2020, 10:19 PM #3
winic1 winic1 is offline
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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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Old 04-17-2020, 09:58 AM #4
Heat Intolerant Heat Intolerant is offline
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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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Old 11-17-2020, 01:29 PM #5
Sculptor44 Sculptor44 is offline
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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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