My first symptoms started two-and-a-half years ago. One day I woke up with shin splints in both legs, couldn’t hardly walk. Over the next five months I went to two regular doctors, who sent me to a cardiovascular specialist and a podiatrist. I was basically on my back or in a chair for five months.
Then they went away in like a week. I started to move around. My legs were very weak and I got out of breath quickly—I thought it was because I was so out of shape from being immobile for five months. I also couldn’t close my hand all the way to make a fist and my ankles felt swollen.
My primary care doctor decided to treat my shortness of breath and leg weakness as primary, and then deal with the tight ankle skin and stiff hands. I went to the gym three days a week and to physical therapy once a week. Nothing was getting better.
I went to a neurologist, cardiologist, and a pulmonologist. All of them told me the same thing: what you have is very complex and serious, but we don’t know what it is. The pulmonologist diagnosed me with interstitial lung disease [a common result of systemic scleroderma].
Finally, I saw a rheumatologist. By this time, I could barely walk. They did a biopsy from muscle in my leg, but it came back negative. He reread all the medical reports from each doctor, and then said: “I know what it is. You have scleroderma.” So I met with a scleroderma specialist at Stanford. She really knows her stuff.
I have diffuse systemic scleroderma. It is the worst one to have, extremely rare. The vast majority of doctors either never heard of it or saw it or know the name. You need to get to a hospital with doctors who know what to do. It took 15 months to diagnose it and over ten specialists and thirty doctors.