Anyone have Scleroderma?

The pursuit of labels can be frustrating. I have similar symptoms. A long time ago I was diagnosed with lupus but doubted it. I have high anti-centromere antibodies but no Raynaud's or calcinosis. My kidney function went down. My fingers are curling in but local rheum. says skin is not tight. I know I don't meet the criteria.

Did you see a Scleroderma Program? I think people like us will be monitored in case symptoms do appear that might harm organs. I have been told many rheumatologists don't know much about scleroderma so I am waiting for my appt. with a Program.

Hi, I haven't seen a Scleroderma Program yet. May I ask where this program is and how to get appointment to see them? I will have a follow up appointment with the rheumatologist next week. I hope the SCl70 antibody results is false positive. I've read that if it's three times higher than the threshold value for a positive result, the likelihood of false positive is slim. My value is right around three times higher.

years ago had positive Ssc blood results; 3 rheumatologists here denied scleroderma - none the 3 agreeing with any one or 2 of the others, 25 years later STILL positive for Ssc; have 3, maybe now 4, of the 5 criteria listed - perhaps someONE will present as textbook classic, but most not - since is so rare (likely because it is not on the radar) getting it recognized can be difficult and leaves person at risk. test results can come back at any number, and not accurately represent us. start an "illness resume" (saw idea online - genius!) - dates, times, doctor visit convesations/duration/outcome - documenting will reveal any pattern, or lack of one, and can be your lifesaver as you go from office to office. do not doubt how or what you are -experiencing. i try to understand that while i live with this 24/7, the doctor has maybe 15-20 minutes each time and most are bound by the "book" - time is necessary for us to get them to think outside a box they have never been in - we each bring our own and they need to get in with us. i will be forever miffed at 25 years of "taking care of myself"- but finally have a primary (an NP) that should be set as the required standard; and find a trauma therapist - there is such a thing as "illness/medical induced PTSD" - search the definition - you may see yourself; we need every possible avenue of acknowledgement to get to the best place possible for us. we will always know ourselves better than any provider ever will - but we must keep going until we find the "one" (or more) for each of us. this is a process - we cannot be intimidated or discouraged as we continue to require answers to our questions. true story - in March i had (and still) a most painful thigh muscle situation that we are now looking at myositis - suggested not by an MD, but by my long term, most ethical chiropractor (who knows every glitch in my skeleton) and said this is medical, then podiatrist who said same. answers will be found if enough people hear the questions. and this is a good place to start.

The criteria list is intended to have the best participants for studies, but many docs use them. As long as my kidneys recover and my lungs stay okay, and I don't have painful calcinosis, I don't want a diagnosis because I don't want to take immune suppressants. I will go through a lot of discomfort to avoid those, but I would take them to save my life. Otherwise I don't care about diagnoses and avoid docs unless I really need to see them! I definitely have medical PTSD from the issues one of my kids had growing up.

I am with you on not taking meds- am now withdrawing from a relatively benign drug that took 15 months to bite me; I have always declined due to sensitivities. Kidney/lung/heart is ok so far, GI is iffy but can manage; only need diagnosis so i know what is going on and can choose how to care for myself; PC is understanding and suggests but does not push - i take responsibility for myself, will never blame them for my choices. my father went blind after 10 years of not one glaucoma test by an ophthalmologist he never questioned, as a medical professional himself.- they just wrote out the huge malpractice check after reading 10 years of office visits; i go to a new specialist cautious, at arm's length - they have to earn my trust and copay. i have several other rare things documented to add to the mix, so once i get me sorted, the visits will have to "urgent", not scheduled. in fact, i figured out my internal shingles (zoster sine herpete) not my primary and they did confirm. not everyone has the option or ability to self care. i may have to give in on occasion, but giving up my autonomy is just not in my genes (though lots of other things may be).

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

Fingers crossed. In the meantime, you may appreciate this video with Mayo Clinc's Dr. Leroy Griffing talking about scleroderma.
- Video Q&A about Scleroderma https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

There does exist a "more accurate" blood test. I can't remember the name of it-- I'm so sorry. I scanned the other posts and I don't think I saw anyone mention it.

I had 3 or 4 positive Scleroderma 70 blood tests, but I had none of the visible symptoms. The rheumatologist I saw at the University of Pennsylvania ordered a follow-up scleroderma test that is supposed to be more accurate than the other ones. That test came back negative for me (whew/thank goodness!).

I see a dermatologist for other skin issues. When she saw the results from the "more accurate" blood test, she said it was virtually certain that I did not have (and maybe never would get) scleroderma.

It was a real relief! If you haven't already, maybe you could get the "more accurate" blood test?

Wishing you answers and good health!