Candace, I'm with Greg on this. There are so many things you have to battle with in a rare disease, your medical provider shouldn't be one of them. If he treats you condescendingly or doesn't give you the information you ask for, file a complaint. He may be the director of the department, but I'm sure he also has a supervisor who evaluates his performance. There's more to being a good doctor than just medical expertise.
My husband's hem/onc retired recently and we got a replacement who had the bedside manner of a pile of rocks. He may have known his stuff, but he got bad reviews from his patients so he's out. HIS replacement is an absolute doll. One meeting and it was obvious we're all on the same page. Color me happy!
BTW, I'd also like to give a big thumbs up to Nicole for giving such good advice (as usual)!