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Usually, the CREST symptoms are just that, symptoms, not a diagnosis by themselves. The CREST symptoms are most of the time connected to the limited kind of systemic scleroderma. If they diagnosed you with diffuse, that would mean that the tightening of your skin is on your stomach or chest or upper legs and arms. Do you have any internal organ involvement? Have you had any positive bloodwork? This disease is sooooooooooooooo frustrating because each person shows it in such an individual way that you think you know what is happening and then you get thrown another curve. My husband is going on Cytoxan IV and if anyone has experience with that I would love the input. Try to hang in there, it's hard, I know.

It sounds like you're struggling with the beginning of diffuse scleroderma, and I feel for you. Do you have Raynaud's? What bloodwork was positive? ACA? SCL-70?

My husband is still waiting to start Cytoxan. Apparently getting this done in our local community hospital is a big struggle. A cancer doctor has to order it because its a chemo drug. We may have to go back to Boston. I just hope it works to slow down the progression. He's feeling good right now, though so I'm not going to complain. He did start with sciatic pain and fatigue that is significant. I just hope it goes away as fast as it came. Let me know how you're making out. Trish