[sandy56]

My sleep study did not show sleep apnea but my O2 levels did drop to 85% I was told my test scores while abnormal did not quailify me to get further evaluation. Does that sound right?
I have been refered to the Mayo clinic in Jacksonville to r/o myasthenia. I hope to finally get some answers there.

[AnnieB3]

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

[sandy56]

Just ordered a sleep study pulse ox to better monitor my O2 levels. I suspect low O2 levels at night are the reason I feel so exhausted in the mornings.

[gr8ful]

I think the interaction of sleep apnea and MG can be very dangerous. They used to push CPAP machines on people that didn't receive much benefit from them. I've heard the insurance companies are trying to clamp down on CPAP over-prescription to save cost. It's harder to get an insurance company to approve the expense at this time. I'm even having trouble getting approval for certain supplies that are 100% needed every 6 to 12 months. It just means you have to waste a bit of your time on the phone getting approvals.

The CPAP machines take a while to get used to, and have other drawbacks (for instance my wife is not thrilled I need to use this gadget each night). You must be well fitted for the headgear so it fits your head and works well given how you sleep. If the headgear doesn't fit well, the therapy is useless. If you get a CPAP machine and you think you don't have the right headgear fit, have them try a different style or size until it works for you.

For me, the CPAP system works very well. Waking up tired and aching is not OK and I don't do that anymore. It used to be a huge problem affecting family, work and every other aspect of my life.

Trying to sleep with a closed airway can't be good for anyone with MG induced breathing issues. I've seen some data showing CPAP machines can actually save the life of someone who enters a MG breathing crisis.

If you need a CPAP system, get one, and don't let them talk you out of it. Then, give it some time to learn how to sleep comfortably with it. If you are like me, it will make a big difference.