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Is it Diffuse or is it Limited?

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#1 LMS


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Posted 30 March 2008 - 08:16 AM

I am currently being work-up for Systemic Sclerosis. I have an ANA titre of 1:640 w/ a centromere pattern. I know the pattern is more indicative of Limited/CREST. The research I have found indicates that a person could have Raynaud's for years before seeing other symptoms. I started developing calcinosis 6 weeks after my first Raynaud's attack, my hands are constantly swolen, I am often short of breath, and I have seen skin changes along my hair line that look like the start of vitilago (sp?) Any thoughts or ideas?


#2 Snowbird


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Posted 30 March 2008 - 01:00 PM

Hi Loren

My rheumatologist told me that the centromere pattern points to Systemic Scleroderma Limited CREST. The SC1-70 pattern points toward Diffuse Scleroderma. Have you seen a Rheumatologist yet? He/she will need to confirm any diagnosis? I was also told that the blood tests alone can't confirm scleroderma...other symptoms will need to be present too.
Sending good wishes your way!

#3 janey


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Posted 30 March 2008 - 05:43 PM

I took this off of our Limited SSc page.

Systemic Sclerosis (scleroderma) is classified in terms of the degree and location of the skin involvement: Diffuse, Limited, or CREST Syndrome.
CREST Syndrome does not necessarily have any skin tightening at all.
Limited is limited to the hands (although the face and neck may also be involved.)
Diffuse is when skin tightening also occurs above the wrists (or elbows, see below).
Systemic Sclerosis sans Scleroderma is when there is internal organ fibrosis, but no skin tightening.

Of course with scleroderma, nothing is cut and dry, so you'll find variations in each category. I have 2 swollen fingers on both hands. I use to have hard skin to the wrist,(but that's softened). I currently have raynauds, lung and heart involvement, and a little GI involvement. Because of the fast onset of symptoms, we (my rheumatologist and I) originally thought diffuse, but now we just call it systemic and just keep close track of everything.

Big Hugs,

Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Karenlee


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Posted 31 March 2008 - 02:15 AM


I am in the early stages of "diagnosis" so many of your questions I cannot answer but am curious of as well.
Your comment about the changes along your hairline that look like vitaligo caught my attention. I have the same thing but didn't pay much attention to it because I was so focused on the telangiactasia spots on my face. I thought I had just gotten too much sun on my honeymoon, but that was almost 2 years ago. Please let us know what you do find out about that. I am sorry I couldn't be of more help with your questions.

My thoughts are with you during your journey.


#5 Karenlee


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Posted 31 March 2008 - 07:04 AM

Just found this info on a website.

Vitiligo causes white patches on your skin. It can also affect your eyes, mouth and nose. It occurs when the cells that give your skin its color are destroyed. No one knows what destroys them. It is more common in people with autoimmune diseases, and it might run in families.

#6 jefa


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Posted 31 March 2008 - 08:10 AM

Yes, Karenlee. Here is a link to a MedicineNet article which goes into Vitiligo in more detail.
Warm wishes,

Carrie Maddoux
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#7 barefut


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Posted 31 March 2008 - 05:40 PM

Just a little FYI that I learned with my son when I thought he may have Vitiligo - Tinea Versicolor looks very much the same as Vitiligo but is not autoimmune related.