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.