Erin, That is what they often say, "I don't know what to do for you" or "I don't want to do anything to hurt you." They're already afraid of legal ramifications. I can't tell you how many times I've encountered that for a variety of medical situations.

Don't say anything about their "fears" or legalities! Focus on what you need. Tell them you are scared and don't want to wait for meds, since MG can tank quickly and without warning. Tell them that you want to be in the hospital for testing, oxygen, and IVIG. Well, who ever "wants" to be in a hospital, but you know what I mean!

If that's what you want!

In a hospital setting, they can do IVIG and oxygen if necessary. They can do the list that I wrote. It's important to document your condition right now, by doing ABGs, etc. Why? You do need some proof that this isn't psychosomatic. Not that you are that, but that's what they often do when they can't "figure out" what's going on with a patient or there is no solid proof.

Well, there is proof, but it doesn't fit their MG algorithm.

MG is not a simple disease. And new antibodies are being found all the time. And mutations. They can rerun the LEMS stuff. And do CMS tests. They should be very thorough.

I have a theory that some people with MG have less circulating antibodies and that they are more "tissue bound." It has to do with the modulating antibodies and how they work. AChR binding and modulating antibodies have different characteristics.

The important thing is to have improvement of your condition. The worse MG becomes, the longer it takes to recover.

You could also ask them what other condition has fatigable weakness that responds to Mestinon and IVIG. Sometimes you have to point out the obvious to doctors!

How much did/does your MG fluctuate? What were your first symptoms? I think even you need to write down the history of your MG, to know for sure in your mind the condition of your own body. It might help to counteract this nonsense that you're getting.

When I had my crisis, I was 2/5 muscle strength. I could barely walk, breathe, or open my eyes. I couldn't squeeze the urgent care doc's fingers at all. My O2 was dipping into the 70s. My sleeping O2 was 66! My average MIP was -24, lowest -17. But the doctors didn't put me in the ICU or give me steroids or anything other than oxygen for FOUR days.

Why? They hadn't put my diagnostic notes into the computer. They only had the notes of a total jerk neuro who said that I wanted to be sick (malingerer) for SSDI!!! So they ignored the reality and hard cold facts in front of them in favor of a GodDoctor.

It was only when I was being walked down a short hallway (in bad condition), when I said to the neuro on call there, "It's disappointing to have a crisis when I had just gotten up to 6 miles on my recumbent bike (at a snail's pace)." He literally screamed, "We're doing steroids!" So, until I said that, he thought I was a malingerer who wanted to be sick for money. I guess I wanted to stop breathing for money then, too.

Doctors are odd little ducks. Well, schools of sharks. They follow the leader and do what they're told. That is the reality many of us face who have no or little evidence. But that's why MG is a clinical diagnosis backed up with tests, not backed down with negative ones. A negative proves nothing.

Resting only improves someone with MG if they are mild to moderate. Even then, it might not. You are beyond that point. You need more care.

I hope you get it and soon!

Annie