Systemic Scleroderma Sine Scleroderma
Posted 28 October 2006 - 04:51 AM
Posted 28 October 2006 - 06:22 AM
Welcome to the Forums! I am glad you found us, but sorry it is because of your diagnosis of Scleroderma Sine Scleroderma.
I know you asked for responses from people with experience, but I thought I would give you the link to our Sclero A to Z web page that talks about Scleroderma Sine Scleroderma.
I hope you find these helpful!
Posted 28 October 2006 - 06:52 AM
I have sine sclero. What would you like to know?
Posted 28 October 2006 - 07:22 AM
I had systemic sclerosis written up in the differential along with Lupus but MCTD was the original diagnosis. My story is posted under difficult diagnosis if you want to know my experience.
Everyone is different but it seems that Raynaud's is very common. My hands and feet will sometimes go blue to purplish.
There doesn't seem to be a lot of information available about sine scleroderma. Probably a lot of people who have it are not diagnosed because the typical skin involvement isn't there or is minimal.
I know that this site has some related links to pub-med.
Posted 28 October 2006 - 08:07 AM
Hailee was right when she said she bet a lot of folks were not diagnosed that have Sine Sclero. I think it may go unnoticed too, until there is a lot more damage done to internal organs, like myself. My lungs are pretty bad because I think I was walking around untreated for a tad too long. I have the typical problems of sclero....GERD, Raynauds, fatigue, SOB, red dots, small mouth...I just do not have skin tightening. I had muscle aches and soreness at first, but it has gone away almost completely. Please, ask me anything. I hope I can be helpful.
Posted 30 October 2006 - 01:44 PM
Posted 01 November 2006 - 05:09 AM