Hi, Deb

As always, you have me chuckling. Chuckling, and yet what you say always has the ring of truth––truth, and familiarity. I have a tele-med appointment tomorrow morning with the neurologist who first diagnosed me. I spent the last half hour putting together questions I'd like to ask, chief among them: Does my recent blood work suggest that it's okay to continue with the EB-N5? My other questions are mostly "filler" questions, in case I get the feeling that I'm the one who's expected to carry the burden of the conversation. I mention this because you've given me an idea––a perfect idea!––for yet another question: What should I call this "thing" I've got? ("Go slow, Doc, please! I'm writing this down.") Like your experience, I now have so many applicable terms ("poly-" vs. "peripheral," "axonal" if I choose to use, "severe" if I think it helps to tack it on, etc.). As I believe I said in an earlier post, for the past few months I've been calling my "thing" idiopathic sensory-motor PN (I've been holding terms like "axonal" and "severe" and "large fiber" in reserve). I don't know my neurologist well; I know him well enough, I believe, he's a good man––a bright, capable, caring, good man. But I also know (or imagine) that meeting day after day with people with essentially incurable diseases can be downright spirit-deflating. I just hope my neurologist isn't sitting at home right now thinking, "Oh, gawd, tomorrow morning at 9 am I have to phone Ray. I sure hope that he doesn't ask me to give him The Cure!" 😀

Stay well, Deb!
Ray