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Disease progression

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My rheumatologist is between MCTD, Systemic Sclerosis withCREST variant, and Lupus. I have

since developed Reynaud's, stiff joints, and yada, yada, yada...you guys know the drill. I

have had swollen hands for over 20 years! who knew it was a precurser to all of this. My hands were swollen all day yesterday. I have the R and the E is beginning. I get bloated

after I eat and a gasy stomach. I also had one incident of the T

 

I have a few questions if someone can help me:

1. How long does it take for sclerodactyly to begin?

2. My knuckles on the inside of my palm are enlarged. Is this calcinosis?

3. What is the general progression of Systemic Sclerosis withCREST varient?

 

Thank you everyone.

Loren

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Hi Lauren,

It's so frustrating in the beginning. I have CREST, even though it's not really called that anymore. It's limited systemic sclerosis. You may never progress any more than you are now. I have almost no skin involvement and was diagnosed two years ago, and have had raynaud's , GERD, and telangiascias for 10 + years. If you have limited, it generally progresses slowly or not at all. Good news for the most part! Get the book "The Scleroderma Book" by Maureen Mayes. And get a good doctor who specializes in scleroderma. You need someone who will keep up with the varying symptoms of this multi-faceted disease. If you need more info, this site is excellent. Also check out sclerodema.org, where there are lots more articles. Good luck,

Peace,

Karen

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Hi Loren,

 

You ask the tough questions that all of us would love to know the answers to. Unfortunately, there are no clear cut answers to your questions, as this disease manifests itself differently with everyone, and progresses differently for each patient. I will give you a link on calcinosis though that should help you understand that symptom a bit better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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