QuestionWhat are the chances of my localized,(linear), scleroderma becoming systemic? I was dignosed 35 years ago at University of Michigan by Dr. R. Harrel. It has spread since then, but I have noticed other vague symptoms as well.
AnswerThe experts I've heard, read, and talked to say localized scleroderma doesn't "turn into" systemic. However, they've seen so many twists and turns in this disease, they are all open-minded about it!
Consider a couple of possibilities - your "localized" scleroderma could have been misdiagnosed and very slow to fully develop OR you have the honor (not!) of developing both localized and systemic. Never heard of that, but I wouldn't be surprised by anything!
There are also many other conditions that have the similar symptoms of fatigue, joint pain, reflux, etc. Even aging can contribute to "vague" symptoms that are hard to pin down.
A key symptom to be wary of is Raynaud's phenomenon, where fingers and toes turn white on exposure to cold as blood vessels spasm shut, blue in later stages, then finally bright red when the vessels relax and freshly oxygenated blood returns to the area. 95% or more of people with systemic scleroderma have Raynaud's - but, Raynaud's is also in about 2% of the population as an independent disease, so even that isn't a sure sign.
However, if I were having systemic symptoms, like swelling in fingers, Raynaud's attacks, reflux that's difficult to control, profound fatigue, joint pain, tightening of skin in fingers or toes bilaterally (on both sides in the same areas,) I'd go back to the U of M for another appointment. At least they could rule out systemic scleroderma and point you in a direction to get you proper diagnosis and treatment for your current symptoms.
If you're not near the U of M anymore, check with the Scleroderma Foundation www.scleroderma.org or 800-722-HOPE to find a scleroderma specialist near you.