Thanks, Alice, for posting this.
When I had my crisis, I should've had a Bi-Pap. My O2 saturation was dropping to 66% while I was sleeping. But they were wholly incapable of dealing with an MG crisis. Like when they did my arterial blood gases; one while on oxygen and one right after I took it off. They saw the "hyperventilation" and chalked it up to anxiety. I'm always calm and never "anxious." Being on oxygen while having an ABG is like eating a hot fudge sundae before getting your glucose checked!
When I finally made it to urgent care, because my O2 saturation was not going up from 93%, I couldn't squeeze the doctor's fingers during the neuro exam. I "thought" I was squeezing them really hard. Sometimes the weakness can come on so slowly that you don't notice it. I highly recommend an oximeter so you can know your normal. And if you are doing worse, look in the mirror at your face, try to breath in and out into a peak flow meter, squeeze your hands, etc.
I sure didn't want to admit that I was on my way to a crisis and I think that's also a part of the problem. Who wants to be in a hospital? I'd rather do anything else. But you are right that getting help as soon as possible can help you avoid a full blown crisis. And the worse MG gets, the longer it takes to recover.
My average MIP in the hospital was -24. Yeah, that's "normal," right?
Knowing what your normal is can help combat ignorance by hospital staff. My normal is in the -80's, so I was at 1/4 of my normal. It's not only how low but how far down you go!
There sure is a lot to consider with this disease. It's nice that people here have so much to contribute to each other. Yes, Alice, that does give me hope.
Annie