Glad you found this site! I'm really new here, too, and it was such a relief to find such caring, understanding people.
I hope you can get a definitive dx soon. My grandmother has scleroderma, and it's been over 12 years since she was diagnosed. She is this adorable, tiny, full of personality japanese lady (related to me by marrying my widowed grandfather when I was a baby). It's been hard to watch her go through it.
"You do not have a soul. You are a soul. You have a body." C.S. Lewis