Ally, I can't even say how sorry I am for all that you have been through. I personally know exactly where you are at and it has caused me such bad PTSD. To know that those who are supposed to help you, and are the only ones who can, aren't helping or won't help you is a very threatening feeling.

What I found simply nonsensical is this: "he did not feel the trouble breathing or the facial weakness were symptoms." That's crazy. What were they from then?!!! Since they had admitted you, they were responsible for figuring that out.

You can tell when medical "professionals" have gone from caring about you to covering their backsides when they start speaking illogically; denying all evidence that you have MG that there is. They were obviously trying to keep themselves from a lawsuit, which TT just said, is fast becoming the norm. Instead of helping patients, the moment they "fear" that they have done something wrong, they send in the risk managers and lawyers and do not help the patient anymore.

What can we do to help? Can any of us tell you of a doctor whom we know that might help you?

Your MIP and MEP readings are always "relative." Unless you know what your "normal" is, your doctors can't say that what your numbers were are normal. To me, they are definitely not normal. My normal MIP and MEP are in the 80's. When I get worse, they are about half that. When I'm near a crisis, they hover around the mid-20's. I know exactly from my breathing tests at what "phase" I'm in. And that is why I often go nuts about everyone with MG needing a pulmonologist (a good one). That way, you can show a consistent history of breathing tests to "prove" what your normal and not normal are!

I wonder why they couldn't get an ABG on you. Some techs just can't do it well. They should've gotten a senior one to do it. Damn, because that would've been valuable. Does your pulmy do them? It still needs to be done because it would be "proof" that you have a breathing problem. They can't say an arterial blood gas shows trouble breathing because you didn't try hard enough!!!

Do you have copies of the antibody tests? Can you say what the binding, blocking and modulating were and the ranges?

I would highly suggest doing the following. Document. Write up in a very simple format the results that show you have MG. Have different headings like Breathing Tests or Myasthenia Gravis Antibody Panel and then list results underneath. Take photos. If you haven't seen a neuro-ophthalmologist, try to see one and have them document any ptosis. I didn't know I even had double vision until the N-O I saw pointed it out. And then I would go as far to take this list or lists of proof and go to whomever is "above" your neurologist and ask him what the standard treatment is for someone with MG. They have to give you the same standard of care they do for every other MG patient or they can be in hot water with the state medical board.

I'm sure you've gone to the ER before - what did they do?

If you get worse, please go to the ER. I am worried about you. And all this stress is not helping. YOU HAVE MG. You had antibodies. And, by now, you probably have antibodies to neurologists. Again, I am very sorry you are having to go through this. If you haven't gone through it, it's hard to even describe the terror of it.

LOTS OF HUGS,
Annie