Is there a scleroderma clinic near you? I found that general rheumatologists don't know that much about scleroderma (Crest syndrome is a form of scleroderma) and I got an appointment with one who is part of a specialized clinic.

My scleroderma specialist refers me to monitoring tests of heart, lungs, kidneys and GI.

There is a Facebook group for scleroderma that you might benefit from.