AboutAmelia Yaussy Expertise I can answer questions about systemic scleroderma and live and internet resources to help you cope with this disease. I have personal experince with scleroderma, osteoarthritis, fibromyalgia, and Sjogren's Syndrome.
Experience I am a systemic scleroderma patient (12 years) and have been active in support online for nearly the same amount of time. I proposed the Usenet newsgroup alt.support.scleroderma and own the website ihavescleroderma.com.
Organizations I am a board member and volunteer for the Scleroderma Foundation, Ohio Chapter.
Publications Arthritis Today, Sept 1997, "A guide to the internet"
Education/Credentials International Webmasters Association, Web Technologies Certification
Awards and Honors Volunteer of the Year, Scleroderma Foundation, 2004; Advocacy Appreciation Award, Scleroderma Foundation, 2005
Question Hello, I am very confused.
I had an appointment with my dermatologist, who advised uva treatment. I have subcutaneous morphea from breast tissue to under armpits down to elbows (both sides) and from inner thighs, to knees. a plaque on flank and one on hip. a large very thick (seems to be attached to muscle, on groin) and what looks like plaques developing from inner arms to wrist and knees to ankle.
Before I was diagnosed, I was for ever at my doctor, and referred to hospital, neurologist, numbness in legs gastro:.. reflux, had to have voice therapy,.... diagnosed with heart murmur........COPD
My confusion now, is, how does the dermatologist know, that there is NO internal damage, he said that the scl-70 and ana were normal. I don't want internal damage but would like to be sure that there isn't.
Than you Lynne
Answer Lynne, the diagnosis in scleroderma is based on symptoms. history, and observation, so your doc didn't see or hear evidence of systemic scleroderma AND the ANA testing backed that up. COPD and heart murmur aren't systemic scleroderma problems, and reflux is very common on its own. You don't mention Raynaud's phenomenon, which is present in 95-98% of systemic cases. If you don't have that, odds are you don't have one of the systemic varieties that can cause internal damage.
I understand your hesitancy - it's shocking to have these things going on with your skin and easy to tie other symptoms to it. Be vigilant for new symptoms and take care of the whole you.
