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JJ-Knitter

Systemic Scleroderma Sine Scleroderma

7 posts in this topic

I was recently diagnosed with systemic scleroderma sine scleroderma and am having some difficulty finding out much about it, at least from an "experience" point of view. Does anyone else on the forum have the same form of scleroderma? What can you tell me about it?

 

JJ :huh:

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Hi JJ,

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!

Warm wishes,

Heidi

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Hello JJ,

 

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.

 

Blessings,

 

Hailee

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JJ,
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.
 

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Wow, I've hit the jackpot! Heidi thanks for the links and everyone else, thanks for the info and support. I was wondering about the small mouth thing and if it was only the folks with the skin tightening who got it. You all seem to be on Cellcept - any comments on it?

 

;-)

 

JJ

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I have been diagnosed with sine systemic sclrosis, and think it is very frustrating because you absolutely have no signs of any illness whatsoever, but unfortunately I do have many internal problems with Scleroderma, but we treat each one and learn to deal, good luck, Love, Sally

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