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 Hi. I wrote you last week regarding an abnormal blood test result, but I've gotten a second one. I have scleroderma. The first test my Creatine Kinase level was 270, my Vitamin D was 36.3. I also had a 24 hour urine done. The calcium level in my urine was 405. Lately, my muscles have been very achy and my arthritis in my knees has been bad. I'm very concerned expecially because of the way I've been feeling. Can you give me an idea of what could be wrong and should I stop taking the calcium pills that I've been taking? Thanks.
Answer Don't stop taking anything without talking to your doctor first, but if you're too concerned to wait for your appointment, call and ask. I've never had any experience with high urine calcium and from what I read there could be any number of things that cause it. I'm sure your doctor will investigate it further. In the meantime, keep track of your symptoms, when they occur, and what makes them better (if anything) to help your doc fully assess your case.
These doctors are rheumatologists who study scleroderma and treat primarily scleroderma patients. They are the most experienced with the disease and can work with your local doctor on assessing you and stabilizing your health. There is no cure for scleroderma but there are many treatments for symptoms and complications, and more studies going on all the time. Many of us live normal lives even with this disease, and proper treatment of symptoms and complications can be the key for this.
