Sandy, The "standard" most pulmonologists use for when to have a BiPAP or CPAP and/or oxygen is anything below 88%. Have you seen a pulmonologist? There are some who are qualified to review/do sleep studies. It would be a good idea to find one who does. A neurologist is not a pulmonologist and aren't board certified or qualified to help you with breathing-related issues.

Hypoxemia (low oxygen) while sleeping is dangerous. And they got a "snap shot" of your breathing on ONE night. It could be better or worse on other nights, depending upon how your MG is during the day. During my MG crisis, my O2 went down to 66%. When my MG is sort of okay, it can go below the magical 88%. Not even funny. And I don't have sleep apnea either.

Since MG is a disease that causes fluctuations in muscle strength, it can be anywhere from mild to severe, even during ONE day. Chest wall muscles are some of the 640 skeletal muscles in the body that MG can weaken.

A good pulmonologist will not only get you set up with things to assist your breathing but make sure they followup (probably in a few months) with an overnight oximetry, which can be done at home.

Sleep apnea isn't the only harmful thing that happens while sleeping! Shame on them for not giving you the proper care. They should have referred you to a pulmonologist, at the very least.

Talk to the Mayo docs about this. If you can bring someone with you for all appts. there, that would be a good idea.

In the meantime, you could try to prop yourself up with 2 - 3 pillows while sleeping. Some people do better sleeping in a recliner sometimes. Keep your environment coolish while sleeping too. Good grief, can no one in medicine help with even ideas?!!

I hope you do get answers soon. And some damn breathing support and/or oxygen!


Annie