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Originally Posted by bluesky
Hi Everyone,
I have a sort of emergency question for anyone who has also been diagnosed with sleep apnea. I did a sleep study last night and, no surprise, I was told that I have severe sleep apnea and my blood saturation level fell to 80. So that's actually good news in that it confirms what I was recording at home as I posted in my (way, way too long) earlier post. The problem is that I think it's due to mg and I have no way to confirm it. I have recorded really low oxy sat levels also just lying down and then, this weekend, when I flew on a plane I spent 14% of the time with an oxygen saturation level below 88% - often dipping into the 70's (I knew I always had a hard time breathing on planes!!!!). So I guess my point is, it's not just a sleep issue for me.
So here's my question - the sleep doctor wants to put me on a CPAP. I'm scared to death that having to breathe out against pressure is only going to make me weaker. He knows that I tested positive for mg and he's seen my drooping eye, etc. But when I told him about my fears this morning he blew me off and said it wouldn't make any difference, that the lungs just spring back on the breath out. My trust level of docs is at zero right now and I know that people with mg are given bipaps so the pressure drops when they breathe out. At least I think I know that! I tried doing some research but I can't find anything on the internet.
Please help!!! I would love something to help me breathe, but I don't know what to do. I feel like I don't have a doctor yet that I can turn to that I have confidence in and I don't see an mg specialist until late summer, at the earliest.
Thank you for any help! I don't know what I would do without this forum.  |
I have both conditions. The sleep studies I completed a year ago confirm both central and obstructive sleep apnea. I was actually diagnosed sixteen or so years ago, but ignored it until last year. Results of the sleep studies showed less than two hours of sleep a night. By their scoring system, they recommend breathing assistance for anyone scoring over 5 on their system. I believe I scored 28. No talk of a CPAP, they put me directly on a Bi-Pap machine. I don't think the MG affects my night breathing too much, I just have to adjust my breathing rate to the machine until I fall asleep. My biggest problem was finding a way of getting the air in without leakage problems, after two masks, they finally came up with a headband with two soft nose pieces that fit in the nostrils. Just cannot use it if I have a cold or stuffy nose! By the way, through personal research and talking to my neurologist, central sleep apnea is neurological and seems to be fairly common in MG patients.