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How Does Dr. Diagnose From Limited Or Diffuse


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#1 memeto2

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Posted 08 December 2006 - 11:08 AM

WELL I HAVE BEEN THINKING...THE DR.SAYS I HAVE LIMITED SCLERO.BY THE LOOKS OF MY SKIN.HE HAD NO OTHER TESTS TO GO ON BECAUSE IT WAS MY FIRST VISIT.WELL WHAT MY QUESTION IS ,IS LIMITED AS BAD AS DIFFUSE AND ONCE I GET THESE OTHER TESTS DONE (PFTS AND 2DECHO)AND THEY SHOW SOMETHING WILL THAT PUT ME IN A CATAGORY OF HAVING DIFFUSE??I MET A WOMAN THERE YESTERDAY AND SHE WAS WAS WALKING WITH A WALKER AND BREATHING HEAVY AND I ASKED HER IF SHE HAD DIFFUSE OR LIMITED AND SHE SAID LIMITED.I AM NOT TRYING TO BE NEGATIVE OR MEAN IN ANYWAY I JUST DONT UNDERSTAND HOW THEY CAN TELL.I GUESS I SHOULD HAVE ASKED THIS TO THE DR. BUT IT didn't HIT ME TILL TODAY...PLEASE HELP ME UNDERSTAND....THANKS MEMETO2(melissa)

#2 Heidi

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Posted 08 December 2006 - 12:17 PM

Hi,

Both limited and diffuse fall into the category of systemic scleroderma (as opposed to localized). They are distinguished based on the extensiveness of skin involvement (typically limited is limited to hands and can go up to elbows and face whereas diffuse can be all over the body including torso, legs, trunk, etc. Another way the 2 are often distinguished is by how rapid the symptoms come on....in difffuse the symptoms typically come on within a matter of weeks or months and in limited it is more gradual and come on over years. Diffuse is typically associated with greater internal involvement.

Here is a page from our Sclero A to Z website that talks about the two types of systemic scleroderma: Limited and Diffuse Scleroderma.

I hope this information helps.

Warm wishes,
Heidi

#3 janey

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Posted 08 December 2006 - 02:10 PM

Melissa,
From what I've learned from the experiences of people in this forum and from my research is that nothing is etched in concrete. The information that Heidi provided is some great stuff and I'm sure it will give you some answers. However, when I went back and read it, I found it interesting that it said "Diffuse Scleroderma is when skin tightening also occurs above the wrists..." Well, I have diffused and the skin tightening never got past the wrists and now it's basically gone. However, the part that Heidi wrote about "diffuse symptoms typically come on within a matter of weeks or months..." That's me! It only took 8 months to go from extremely healthy to very sick and 60 pounds lighter - not to mention the internal involvement.

Anyway - I guess my point is that we are all different and this disease manifests itself differently in all of us. Because of my lack of skin involvement another rheumatologist might say I have limited - I don't know. At this point I know I have sclero so like everyone else, just trying to deal with whatever rears its ugly little head. Now I've really confused you haven't I. :blink: Sorry about that. :)

Please let us know what you find out on your next visit and how all your test turn out.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 memeto2

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Posted 08 December 2006 - 02:14 PM

thank you all very much!!!i have a better understanding of all this.