Alice, good point about what your normal MIP is and what it goes to. My normal MIP and MEP are in the upper 80's. So for it to plummet down to -24 in a matter of a couple days was bad. And then they were going to release me without checking them again. They only did the bedside spirometry readings, not as accurate as full PFT's, just right before they wheeled me out of the hospital. It took me a month to recover.

Am I up for the challenge of helping? Already on it. I didn't really want to talk about this yet but what the hell. I have not used anything from this website to do the following, just in case anyone is wondering (like Moderators). I have only used my own personal history and that of my family. And research (again, not from this website). I am almost done writing a book on doctoring. Not on MG specifically though it is a main "character" in the book. Hopefully, it will get published. It's been quite a task but I hope to finish by the end of the year (if I don't get the flu). Will it help? Who knows. Will it even get published? I hope so. In all humility, it's smart, funny and interesting. And scary. I take doctors to task. There are plenty of good ones out there but it's the bad ones or ones with bad behaviors that you have to be on the lookout for.

Alice, I love when some people I know say they have had lots of tests done so, therefore, they are fine. If you don't run the right test, after really thinking about what should be tested for, you won't get answers you need. Like my B12 deficiency when my doctor kept insisting I was fine.

Ally, it wouldn't hurt to have those labs redone just to make sure you don't have a problem with lactate and pyruvate. I won't make you even dizzier by talking about the Kreb's cycle. Pretty interesting stuff though.

Annie

For whatever reason (probably due to being honest about writing a book), I am not being allowed to edit the above response, so I'll just add something here.

Alice, I think you should write a book. Or do journaling that could be turned into a book/memoir. The perspective of both patient and doctor might be more valuable to doctors. You are in such bad shape though I don't know when you'd have the time or energy. Or rather, I should say that your disease is doing badly but you are doing well! It would be a really great book, I think. You think well and write well. And we really do need doctors to come up with better approaches to MG; both in diagnosing it and treating it. And treating we patients with dignity and respect.

I also wanted to add that it was my internist, whom I have known now for 26 years, who said over two years ago that I should write a book. I just thought that was ironic.

Annie

Hi Annie,

sorry that my answers are a bit sporadic and dissorganized.

and thanks, I really appreciate what you said.

mostly-"Or rather, I should say that your disease is doing badly but you are doing well! "

and when you said that your internist suggested that you write a book, I just thought of a book I recently read a review about called-"dancing at the river edge", which was written by a patient with SLE and her doctor, who has known her for 30 years.

alice