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Replies to "@vsunshine, I moved your message looking for others diagnosed with scleroderma to this existing discussion: -..."
Hi @vsunshine
I was diagnosed with scleroderma in about April of this year. I have been seeing providers since 2018 because my hands are so painful, and they kept saying it was carpal tunnel which I do only have a mild case of. My provider finally ordered inflammation markers this spring and the result listed CREST which is the old terminology. Now called systemic sclerosis. Mine is the limited form at this time meaning they think it is limited to my hands, forearms and feet.
I have had symptoms for about 18 years and of course my medical record says psychosomatic.
It would be nice if there was a way to remove that since they have been missing this for all these years.
Have you been diagnosed? Which state do you live in?
I have requested appt at Mayo and been denied. I reapplied and am waiting. I do not have formal diagnosis just informal from several Drs probable or possible since scolderma , Ms or connective tissue disorder
I do not have scleroderma, but a dear friend of mine does. I would like to know more about it and how people deal with it so I can more aware of how to "be there" for her and understand what she is going through. I will only read messages, but will not contribute comments.
Thank you.