Try not to get stressed out, it'll just make things worse. I'm sorry you are not getting the care you so obviously need.
First of all, what meds are you on?
Your doctors should not wait until MG puts you into a full blown crisis where you cannot breathe! This waiting until things get the worst they can get is dangerous.
Did they do an arterial blood gas? A chest x-ray? Any tests at all? Did they check your O2 saturation while you were sitting AND walking around? And your pulse, since the pulse will initially go up before a crisis because the heart is working harder to get your tissues oxygen. And someone not breathing well can get atelectasis, anywhere from a small to large area of the lung that is not fully inflating. It can be dangerous.
I've attached some articles about this topic below. You may want to bring them with you the next time you go to the ER, which I suspect will be very soon. You sound like you are in the midst of a crisis. Noninvasive ventilation (Bi-Pap) is often used for patients on the edge of a crisis or in a crisis or post-crisis. And, sometimes, it is smartly used by pulmonologists who realize that MG patients who are weak during the day may not be able to breathe well at night because our muscles get weaker when we sleep.
How did they evaluate your "shortness of breath?" Did they do full pulmonary function tests, including MIP and MEP? Do you have copies of what they did? If not, get them all! That's what they are supposed to do. You can't tell by looking at an MG patient how short of breath they are!
Arterial blood gases need to be done too. And if they show "hyperventilation" that does not mean you are anxious, it means your muscles are already decompensating and you are on the verge of a full blown crisis.
An MG crisis can happen without warning. Well, that's rather silly since there are certainly always huge clues of it. But you never know how quickly you will get worse or how bad you'll get. Which is why you should be in the hospital.
I have to disagree with you on a couple of points, Tyson. First, a MIP, maximum inspiratory pressure, (or NIF, negative inspiratory force) of -20 usually means intubation. Granted, they have to take into consideration things like someone's "normal" MIP but that's pretty darn low and action should be taken. At the VERY least, oxygen should be given. MEP (maximum expiratory pressure) of +40 or less is bad too. For example, my normal MIP is in the -80's. If I go crashing down to the -20's to -40's, I'm in trouble.
And shortness of breathe IS something they would do plasmapheresis for. It doesn't matter what group of muscles is tanking, action is necessary for them not to get worse. If breathing muscles are the only ones going south, which does happen, it is not something to be ignored. It also gives a patient a false sense of "I'm okay" when, in fact, they're not.
No, it is most definitely not wise to go miles away!!! AND if you get so bad that you can't move or breathe or swallow again, you MUST dial 911. You get far better care that way, unfortunately. Believe me, been there done that so many times - and not only with MG - that it's scary what they don't do.
Do you have a pulmonologist? They are invaluable. If I'm getting worse, I know I can get breathing tests immediately and admitted if need be. Or get more drugs too. Neurologists don't specifically deal with the breathing end, so having both specialty doctors is essential with this disease.
You need to keep taking this seriously, even if doctors don't. Go ahead and ask the ER doctor if they'd like you to die in their care (or at home). Ask them if they know the guidelines for an MG crisis. Ask if they would perhaps like you to inform them of what they are.
This is seriously whack.
I hope you will get help soon. You don't sound well.
Annie