Thank you! I'm definitely going to see the rheumys at BU if that's possible. So far I've been working on figuring out how to navigate the system there.
Believe it or not, even though I basically lost my esophagus back in the last millennium (severe scleroderma-type motility disorder) and have Raynaud's (dx'd by my primary care physician, who walked into the exam room, picked up my hand, and said, "See this?..."), minor skin tightening, etc., etc., I've never seen a rheumatologist at all! I'm trying not to run on and on, but I've had a lot of problems over many years. I guess the thinking was that because I didn't have lung issues it was best not to complicate things unnecessarily (I did have a consult with a great pulmonologist about 6 years ago, who found that my lungs were in great shape--PFTs excellent, and scleroderma esophagus but no fibrosis on the CT).
Anyway, to make a long story short(er), my lungs are no longer in the greatest shape and it was my primary care physician who recommended that it's time I see a rheumatologist. She's at a huge group practice, but there are only 2 rheumatologists there within a reasonable distance, and neither of them has any special interest in scleroderma. I'm tired of having to be my own rheumatologist! I want a doctor who knows better than I do what screening tests to order and how often, etc. But even though the word "scleroderma" is all over my hospital charts, I've never been officially diagnosed with it, so I feel sort of dumb asking for an appt. at the scleroderma clinic! And asking my primary care physician for a referral there instead of to the group practice's rheumatologist.
When I called BU's rheumatology clinic, the lady sent me to the scleroderma clinic for scheduling--apparently it's a special dept. I don't have a mobile phone for call-backs and so I've been trying to catch the appt. secretary at her desk. When I do reach her, what should I say? I feel pretty stupid, trying to explain why I need an appt. at the scleroderma clinic when I haven't even been officially diagnosed with scleroderma by my primary care physician. <_<
Sorry this is so long. Thanks to all of you who replied--I do appreciate it!