QuestionI realize that it will take some time (yrs)for my doctors to diagnose me, however I was wondering which type my symptoms might be leaning toward. (40 yr old female, aver. weight, active as possible, healthy lifestyle) Positive Raynaud's nailfold test, swollen fingers/hands, frequent low grade fevers, fatigue, joint pain, arthritis:right thumb joint, left wrist, right bigtoe joint, severe soft-tissue/muscle pain (touch sensitivity), easy bruising, reflux/heartburn, gastro-paresis, bleeding ulcers, mouth sores, dry eyes, swollen fingers, ovarian cysts, kidney stones, (had gallbladder & appendix out), TGN left side face, migraines, extreme forgetfulness & difficulty concentrating, low WBC, muscle spasms, most recent alarming symptom is tendons & ligaments rupturing easily. Form extensive scar tissue after surgeries. (Have had pleuresy 2ce & shingles 2ce.) I've had 6 angio-lypomas removed & continue to grow more. I have not yet had a positive ANA test. It's very confusing how auto-immune diseases otherlap in symptoms. (There should be some kind of simple checklist for each auto-immune disease w/all possible symptoms so a patient could checkoff & see which disease they seem most likely to have.)Thanks for caring.
AnswerIt's tough for our docs when we don't seem to follow the textbook, but then that's why they are the pros! You may benefit from seeing a scleroderma specialist even if it turns out you don't have scleroderma. Ruling out other diseases is part of diagnosis. Doctors who specialize in scleroderma are rheumatologists who have experience with many of these diseases but whose long-term interest is in scleroderma. They likely do research and generally see more scleroderma patients than a local rheumy does. For instance, my local rheumatologist has seen 7 cases of scleroderma in her whole time practicing. My specialist has seen thousands. You can imagine what this experience does to help in recognizing the difficult symptom combinations!
The Scleroderma Foundation has a listing of research and treatment centers in the US on their website:
http://www.scleroderma.org/medical/centers.shtm
And these are not the only ones. Your doctor may have someone s/he'd like you to see or there may be someone at a nearby university medical school or center. Many of us have to travel to see a specialist and it's still worth it.