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Lucy H

Don't fit norm of CREST

5 posts in this topic

Hi. I was wondering if anyone out there was experiencing a similar situation. I was diagnosed with CREST but my symptoms are not "typical". Yes, I know that there is no typical but none the less I am still uneasy. The only thickened skin that I have is on the backs of my thighs... red, thick and ridgy. My thighs always have a deep ache (the worst thing to deal with) and my fingers feel swollen. I get Raynaud's constantly and have a few calcinosis on my fingers. No esophagus issues, no facial skin abnormalities, no tapered fingers. I have a history of scleroderma in my family and I am certainly sure that my diagnosis is correct (after 3 opinions). Everything I research says that skin involvement usually progresses from hands/feet to lower limbs with limited scleroderma. Mine is on my thighs in large patches with no other skin issues. I am questioning limited vs. diffuse. I will consult my doctor but sometimes it is informative to hear the experiences of others. Anyone out there like me?

 

Lucy

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You are certainly on the right track by recognizing that there really isn't a "typical"!

 

I have had scleroderma symptoms for over thirty years and have never had patches of hardened skin. Thickened skin is only around fingers and feet that have been effected by Raynauds (so no "progession"). Like you, no esophageal symptoms, but I have telangiectasias (red spots). Also developed secondary Sjogren's and pulmonary hypertension after many years.

 

My father probably had CREST for 30 years before being diagnosed due to kidney and lung involvement. Unlike me, he had esophageal symptoms. For more than 20 years my siblings and I were told that he had "cold hands because he smoked" and digestive trouble because of a "hiatal hernia".

 

From my experience with support group members, the diffuse type seems to come on quickly with obvious symptoms. The slow-onset (CREST) seems more slow and insidious (as with my father and I). I've yet to meet anyone who closely fits the typical scleroderma case that one reads about in texts.

 

Good Luck,

 

Craig

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Hi Lucy,

 

I'm not a doctor, in fact I have no medical training at all, so please bear that in mind with my response. The patches that you describe behind your thighs sound more similar to that of morphea (localized) scleroderma, but your other symptoms more resemble those of limited systemic scleroderma, at least, as I understand the way those are typically described in literature.

 

Typically, systemic scleroderma doesn't cause "colored" patches of skin, meaning that there is swelling, tightening and/or hardening, but no discoloration, of skin affected by systemic scleroderma, and like you say, it usually begins in the fingertips on both hands and spreads upwards, etc. See What is Scleroderma?

 

About 25% of people with morphea eventually develop a few other symptoms of systemic scleroderma, without ever developing the full-blown variety. And a very small percentage (zero to 4%, depending on the study; some doctors say they have never observed it) have morphea in overlap with systemic scleroderma. See Morphea Scleroderma for more info.

 

So depending on the scleroderma expert and how they figure things, you could end up with varying diagnoses. But, you would be in a hazy area that would best be diagnosed by a scleroderma expert as local doctors/rheumatologists are quite likely to not really be able to properly figure it out.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Lucy

 

I have Diffuse Scleroderma and I do have skin discolouration. My skin appears darker almost tanned on my arms legs and neck.

Also, I too am no expert, but I understood that Limited Sclero did not involve thighs.

 

Hope this helps

 

Vanessa

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Hello Lucy

 

I have diffuse systemic scleroderma, morphea and bullous morphea. The onset of my sclero and the progression of it has always been described as atypical. I like being different and as my diagnosis comes from scleroderma experts I'm happy with whatever they say.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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