This looks like a new forum/site, but I am eager to break through the isolation and the vision and mission of this looks awesome, so I will take a risk and jump in.
I had a marker in my blood work about 7 years ago that said I might develop CREST (systemic sclerosis), but I had no symptoms at all at the time and nothing else was done. Then several years later I started having difficulties swallowing but hesitated to do anything because I could manage it fairly well by how and when I ate. It might have just been acid reflux at the time, but not sure. Then Raynaud’s started in my fingers in Nov 2019. They dilated my esophagus in Jan 2020 and just wrote it off as acid reflux, no action taken except a prescription for Prilosec. And my primary care doc, when I shared my concern that I now seemed to have 2 of the 5 conditions of CREST, just said he “had lots of patients with Raynaud’s”. But the dilation did nothing to improve the swallowing so I would have had the procedure to test the swallowing except the pandemic shut things down. This all ends well in that a few months ago I moved to a different part of the state and despite being much more rural my doctors are taking it all, including my Celiac disease, seriously. In fact, the new gastroenterologist did a test that uncovered low IgA levels, so I now tell people I am collecting “ologists” – gastro, immunologist, and rheumotologist, in addition to dermatologist and ophthalmologist. The gastro doc is the first to officially tell me I have scleroderma, and the blood work ordered by the rheumo doc seems to have confirmed it, though the visit to discuss the results of his extensive tests is not until May 26th.
Anyway, sorry for that info dump, but it helps to tell the story. I am thankful that so far I have no skin involvement…so maybe it is the systemic sclerosis sine type? But the risk of internal organ involvement is still scary. I am trying to stay grounded, focused on today (which is still pretty good), not on the what ifs of tomorrow, but would welcome any advice or resources. This is definitely a lonely disorder