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

Annie,

Missed you. Sorry to hear about all of your issues. Good luck with the generic Mestinon. Jim

Wondered what had suddenly taken you away. So sorry to hear of the troubles. Glad you are back.

I hoped you were doing ok.

Sorry to hear about your breathing and glad that the UBOs have not prevented you from writing.

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.

Glad you are back, sorry to hear about your struggles