wild_cat, First of all, it doesn't matter if you have a diagnosis or not. Not being able to take a breath in or out is an emergency. As in dial 911. I'm sorry the hospital is so far away, however, that makes your situation even more dangerous.

The benefits of dialing 911 are twofold. One, the EMT's can give you oxygen and set you up for care. Two, you will be seen immediately (or relatively so) in the ER once you get there.

Did they do even a peak flow meter test? Bedside spirometry? I cannot (or, rather, I can) believe that you were treated so poorly in the hospital. Did they even do an arterial blood gas? Did they check your oxygen saturation?

If you have MG, you can get so bad so quickly that you cannot take care of yourself. Do you live with someone who is aware of all of this?

You cannot go on this way. This kind of breathing is so very serious. You can die, if it's MG causing it. I'm not saying that to scare you! But these doctors were boneheads and should've consulted with pulmonology in the hospital. Discharging you without fully evaluating what was causing you not to be able to breathe is unethical and they opened themselves up for malpractice. They risked your health by not doing pulmonary related testing.

In the meantime, you need to have complete rest. But, to me, it sounds like you are so bad that you need hospital care, including oxygen.

Did they give you Iodine contrast with the CT? I'll almost bet they were looking for a PE (pulmonary embolism). Iodine can make MG worse. BTW, did you get a copy of the report? Ask someone you know to call the hospital to ask for your medical records from that night.

When someone with MG has breathing issues, they can get what's called atelectasis (Ah-tell-eck-tay-sis). It can be a very small "collapsing" of a portion of the lung or a larger one. Now, do not freak out by this!!! I've had this a number of times. When you don't take deep enough breaths in, you can have this happen. It's reversible. That "might" be part of what you're experiencing.

Yeah, Jana, duh.

I would suggest that you keep a bag by the door with a change of clothes, some snacks, water and anything else you might need for a hospital stay. You do not sound well at all. If you have to go back in, I hope someone can go with you to act as your patient advocate. For them to put you through all of that neuro exam BS while you couldn't breathe well is NONSENSE. Any activity for an MGer in that condition can put them into a breathing crisis.

I'm very sorry you did not get the appropriate care. Your only concern right now should be you. Again, not being able to breathe in is an EMERGENCY and you need to dial 911. Please, do not be shy about getting care you need!


Annie