Hankster, I'm going to be a little rough on you but it comes with the upmost kindness.

You NEED to be in an ER and getting more care. Whether that is oxygen or something else, you NEED it. It doesn't matter if you have MG, MS or something else. YOU NEED HELP.

MG can be deadly. If it gets bad, as it seems like it is for you now, you can stop being able to move/walk/breathe/think well. Oxygen will not be getting to your tissues as well and you can have actual heart pain, and a heart attack, due to that. The heart and brain don't do well without enough oxygen!

I know firsthand what it is like to not get ER help. That is why - if you can afford an ambulance - you dial 911. Or ask someone you know to drive you right away if you can't afford that. The reason doing the 911 thing helps is that once you arrive at the ER, they "might" take you more seriously.

Since you now have proof that it's "muscle fatigue" causing your breathing to be bad, you can tell the ER doctor that. You can ask for an arterial blood gas to see what your carbon dioxide level is, which increases when oxygen decreases. Did you ever see the movie Apollo 13? They had an external force causing them to have an increase in carbon dioxide and you have an internal one.

And would it be MS since there's muscle fatigue? It depends upon what tests showed that. If it's MIP and MEP and your numbers kept declining, it's probably MG. Those little details are very important in the diagnostic process. I hope you'll get a copy of your breathing tests.

A good ER doctor will monitor your BP, have an oximeter on your finger the entire time, do a bedside spirometry (which isn't accurate but it's useful), monitor your heart with an ECG, do an ABG and probably some other basic blood tests. And a very good ER doctor will call your neuro or his office for help.

So if you can have someone be your advocate or if you can be your own while you can't breathe or move well then please do go to the ER. You do not sound well at all. Like 4-Eyes said, you sound like you are in an MG exacerbation and can be very close to an MG crisis. An MG crisis can happen very quickly. You can't "control" it at a certain point. It just happens. I'm not saying that to scare you but to make you realize the dangerous situation you are in.

Be nice yet firm with the ER doctor. You could even ask him if he wants you to stop breathing and die on his watch. Say it in a nice way, of course, and take a breathe between each word so he "gets" it. It's the MG patients who are "newbies" and who don't have enough treatment yet who often go into an MG crisis.

If you see a doctor with "pooh-pooh" stamped on his forehead, ask him if he'd like his very real medical concerns dismissed so easily. Ask him how he'd feel if he couldn't move or breathe well at all. Then watch as the doctor's eyes get really wide, he quietly panics and rapidly gets you help.

Please don't put your life at risk simply because of past experience. Be tenacious and get yourself the care you need and deserve!!!


Annie