Thowell,

I'm glad to hear that your daughter was diagnosed. It's a hell of a difficult diagnosis and so important to find relief. Did she also have neuropathy, I'm not clear on that?

Unfortunately the specialist I saw, who does specialize in the condition among other things, didn't do much testing, mostly because he didn't think I had it, so he wasn't particularly useful and I told him so. But to be fair to him, for one I wasn't the typical case. For example, I don't have POTS, and the majority of patients do. I also don't see the improvement that your daughter does on the blockers.

I'll be honest, I didn't pursue it very much. But that's not due to laziness, since I easily pursue avenues that I think will be helpful, but rather because I don't think I have it. Perhaps I'm wrong, but I suspect other things for now and I really can't get the best testing unless I go to the USA or fork out 1-2K out of pocket for the testing, and since it's not high on my list of suspects I likely won't fork out that kind of money at this point.