Kristin finds the compliment of traditional doctors, other patients.
As I struggled recently with a new ulcer on my left thumb (and screamed and cursed every time I banged it on something, which seemed to occur every five minutes,) I will admit that I did not seek the counsel of my rheumatologist. Since it hadn't exploded into an oozing, permanently purple, necrotic sore, I knew I was in my safety zone. Trust me--I've seen the horrors that can befall my fingers. But I didn't have a completely trustworthy attack plan aside from nitroglycerine patches and keeping my thumb warm.
Alas--I consulted the wonderful scleroderma forums and message boards out there on the Internet. After scouring for hours, I came up with my attack plan and shortened my healing time by days if not weeks.
I'm always amazed by the nuggets of wisdom I find on these forums that I never hear from my doctors. I consider all of these patients, though I may never meet them, my other MDs. And I'm so grateful they step up and share their experience.
(Please note: I do advise always calling your doctors for abnormal, strange, painful and worsening symptoms. Better safe than sorry. Or you might lose some fingers like I did a few years ago.)