Anyone out there been diagnosed with CREST (limited schleroderma) and want to share any thoughts or advice? I've been diagnosed with MCTD and possibly 2 or 3 of the 5 CREST factors in late May 2010. Have been back to the rheumatologist 3 times since than and all he says is to stay on the placquenil. At the last visit a month ago I told him the tightness and feeling of lumpy tissue under the skin of my forearms, chest and face was greatly concerning me. Same with the stringly painful tissuein my upper arms and neck. We took more blood and I go back next Wednesday after another month of worrying. I have some other issues but wonder if I'm worrying too much about disfigurement or organ involvement. His nonchalant attitude that it's "just CREST" and a "mild case of MCTD" kind of rattles me. I didn't know CREST was limited schleroderma until I looked it up online after he told me not to pay attention to blogs and websites on the internet. Thanks for any info and God bless.
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