Alice, This is probably the sticking point with MG, at least between me and some neurologists. This is something I wrote when I was ticked off at them for ignoring the obvious.

"I still think it’s funny when neuros say that your MG is mild; like it’s an inert gas. Of course it’s going to be mild just sitting there – inert – in a doctor’s office. Add heat or movement and you have an MG explosion!"

And I think MG is not unlike earthquakes. The higher the quake is on the Richter Scale, the more exponentially worse it gets. The more you do with MG, the worse it gets.

And doctors often say how "scientific" and "objective" they are (no offense meant) but then they ignore the obvious or don't validate tests like pulmonary function tests that are objective. They often say, I believe out of ignorance, that PFT's often appear worse due to a "lack of effort." Or if you have hyperventilation on an arterial blood gas that you must be anxious. Or (sorry, Rach, I HAVE TO use this one) that you are holding your breath when your O2 stats tank.

There's nothing easy about this disease, from diagnosis to treatment, that's for sure. And quite often, neurologists do not make it any easier. As if we are all "faking it" or want to be sick. Poppycock.

I'm sorry you are in a wheelchair but thank goodness you can afford one.

Annie