This is a long shot question. Perhaps there is an ER RN on the forum who might venture an answer.

If an MG patient arrives in respiratory distress, what settings are dialed in on the oxygen and the Bi-Pap?

Does respiratory distress occur more frequently during the night or the day?

I have a first time appointment with an actual MG doctor on 11/5 but that seems like ages down the road. I hope I live long enough to keep that appointment. Respiratory distress is awful.

Well, I'm not a nurse, but I'll try to help.

If your MG is good, worse, or nearing a crisis, breathing is always worse while sleeping because muscles are weaker while sleeping.

Respiratory distress can occur during the night and day if you are in an exacerbation or crisis.

If your breathing is that bad, you NEED to dial 911. If you're going into an MG crisis, time is of the essence. There's no way to know how quickly it will get worse or how severely.

The oxygen question depends upon what your O2 and/or arterial blood gas shows.

The best place for you right now is in a hospital. It doesn't matter if you don't have a diagnosis. Tell them MG is suspected. They can run tests and give you supportive care!!!

I hope you'll be okay. Please get some help.

Annie

I do have the dx of MG.

So far the crises have spontaneously occurred upon awakening before 5am. There is no advance notice of impending crisis. I have 2 oxygen units (in-home and portable) and a Bi-Pap unit. The pulmonologist has yet to return my call even though I mentioned the urgency.

If another crisis hits before I receive an answer, I'll kick up the oxygen level from 2L to 4L without hesitation.

Why working with doctors must be an uphill battle is beyond me.

Thanks again for your response.

Too much oxygen can be bad for MG, too. If you can't expel it, for example. That's why the best place is in the hospital, so they can run an arterial blood gas.

NO, it shouldn't be so damn hard to get a measly phone call. Perhaps you can ask the receptionist if the doctor would like you to die on their watch?

With an MG diagnosis in place, that makes this care extremely stupid and dangerous. Don't wait, go in.


Annie

Thanks, Annie.

The Bi-Pap is essentially an iron lung in the form of a face mask. It does all the breathing for the wearer.

Doc said not to increase O2 but to continue running it through the Bi-Pap.

Thanks again.

Yeah, I know what a BiPap does!

Even on an iron lung, a patient with MG can still stop breathing. It's great for supportive care, but it doesn't address the underlying reason for poor breathing.

If you can't breathe well, you should really go in to see a pulmonologist. Was it the neuro or pulmy who you spoke to? I still think an ABG and possibly an ECG would be a good idea.

Annie