Hey everyone,

I need some of your infinite wisdom. After my disappointing last hospitalization I was thinking of ways to show that I have respiratory problems. My thought was that since I have very bad difficulty breathing when I'm lying flat that it might be a good idea to lie down flat for about 45 minutes, get good and out of breath and feeling awful and then, while still lying down, have somebody draw an arterial blood gas.

I asked my primary doc if she could arrange this and I was happily surprised that she agreed. But, while walking out of her office I thought - do I even know that it really works this way? Would that work? Would that reflect a high co2 if my lungs are weak? Or do you actually have to be in crisis?

I had to spend 15 minutes going over every single step of the last year to show my doctor (again) that I had researched and quadruple verified every step of the way, and because of that had been right every step of the way, and that I was rational and wasn't flinging these questions and opinions around. And frankly, I needed to be given some credit because I HAD been right that I was having trouble breathing, that my oxysats were falling, that I had severe sleep apnea, that I would test positive for the mg antibodies (hello! a 1 in 10,000 chance), that the antibodies were proof that I had the disease, that the titre was not reflective of anything. Anyway, this was all precipated by my casually starting the office visit with "you may think I'm crazy but " and she surprised me by replying "well, not totally." Grrrrrrrrrrrrrrrrrrrrrr. Ya, that p***ed me off. Because I'm still asking questions and, dang it, I feel like I've earned the respect to be listened to. They're good and reasonable questions: why is my facial weakness blown off as bell's palsy when a quick search on google and medline make it clear that if it's recurring it's probably not bell's palsy it's mg (and my emg ruled out bell's palsy)? Why does the weakness and the breathing respond to mestinon if it's not caused by mg? Why do I have trouble breathing while lying down if I don't have lung weakness?

So anyway, I'm in a position that I don't want to go through with this test unless I know that it's a reasonable test for lung weakness. I know that I should have the attitude that whatever it comes back as is just one more piece of information, but I feel like I don't have the luxury of that because I have to constantly fight to be believed and respected and listened to and if this test comes back normal it's just one more thing I'm going to have to overcome.

Okay, as usual that was much longer than I had wanted. But I would appreciate any advice you guys can give me!!!!



Ally