Question:
Greetings
Thank for you response. Re: apt with rheum md - has left me with a few questions - thankful I have access to you.
From md's typed notes from visit 1/31/2017-"..acrosclerosis to PIP joints but w/o any progression in last few yrs. makes me reconsider my dx of ANA negative scleroderma very unlikely and variant normal skin the in fingers appears more likely the thinness of skin in palms and fissuring of finger pulp points to eczema/atopy and away from scleroderma as well..."

I told the him that I had been on prednisone last dose on the 25 of XXXXXXX When he talked about his doubts now about the dx of scleroderma I asked why (other than what he noted above) he said well you no longer need oxygen. I told him I was on 2L at night and PRN to keep sats 93% or above. It was like he did not want to entertain the idea that I still required oxygen and continued to have the same issues as I did when he diagnosed me in late 2009 & 2010. **see below for notes from rheum md re: basis for diagnosis of scleroderma. Back to 1/2017 appt. I asked if not scleroderma what was wrong with me he replied "I don't know"... went on to discuss lab work needed, he would see me in 5wks at which time he would only prescribe a low dose of prednisone given his exam and reconsideration of his previous dx. He left me with the impression that my issues might an "emotional overlay" (a term he used in his notes in 2011).
**Notes from rheum medical records
2010 ...pt here for f/u of her scleroderma... "on exam there is acrosclerosis to the level of the PIP joints and a hint of tightening proximal to the PIP joints but certainly none proximal to the MCP joints on either hand.There is a bit of tightness of the connective tissues around the mouth giving a pinched appearance..." assessment: scleroderma, S\P thoracotomy with mass resection.

During 2010-2011 rheum md was talking about my tx options-prednisone, tx with cytoxin, blood transfusion. In office notes he documented that I understood this was not a curable disease.

In 2014 my PCP and I discussed that yes some days were better than other days - however this did not indicate that I had been cured (as he noted "there is no cure for this disease treat symptoms as best as possible). I am confused is the rheum md correct in that despite his diagnosis in 2009 which was confirmed by the pulmonologist and my O2 requirements,etc that somehow I am cured despite not taking prednisone or Cytoxin or other txs.? Is it possible to de-diagnosis(for a lack of a better term) someone after the fact. Please help me to understand.
So sorry for taking so much of your time -

Thank you for your response and assurance. I will request the rheum md to order the nail fold capillaryscopy(will send you the report), I will also sent the CT report (I would like to get the actual films to you). Mere words alone can not express the gratitude I feel for your service and understanding of the disease process. Wishing you and your family good health.