Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Limited Systemic Scleroderma


  • Please log in to reply
4 replies to this topic

#1 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 22 January 2007 - 11:02 AM

I have the "REST" of CREST and was informed I have the limited form of Scleroderma.
Until my skin began softening... or relaxing over the past year or two... my skin was tight from head to toe (trunk, legs and arms included)! My question, as I'm rather confused here... how is it that I have limited Scleroderma? If such is the case, I am relieved, but this just seems unclear... to me.
BTW... I also want to add... that over time, many of us notice new things taking place... as a result of our diseases. In my case, I speak not of overlapping diseases... necessarily, either... I'm referring to symptoms relative to Scleroderma.
I'm looking forward to hearing from any/all who share the same problem/situation.
Until then... thank you and hope you are doing well as can be!
Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#2 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 22 January 2007 - 02:39 PM

Hi Susie,

If you read the description of the Limited vs.Diffuse scleroderma from the Sclero A to Z website, you will see that one of the primary distinctions is the extensiveness of skin hardening, tightening with skin involvement typically being limited to the hands (maybe forearms) and face in limited and all over the body in diffiuse (so, I would think your description of skin hardening from head to toe would be diffuse). Another primary distinction it seems to me is that the skin involvement in diffuse comes on quick....over weeks or months whereas in limited it comes on gradually (perhaps years).

HOWEVER, I don't think there is always a lot of consistency across doctors in applying the terminology. Thus, what one would refer to as limited two others might call diffuse and then another might call it limited.

I hope you are doing well...it is always good to see you posting.

Warm wishes,
Heidi

#3 debonair susie

debonair susie

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 24 January 2007 - 09:12 AM

Hi Heidi... and thank you for the information!
What you posted is what I had understood... in 1995.
(Please also be aware that I'm answering your post
in haste... and ignorance, as I'm unable to "peek" at
the links you put up on limited and diffuse.... I'll do so
as soon as I can).
Yet, when I began with this more recent rheumatologist, he
gave me the "limited" diagnosis... hence my confusion. I had
let him know that the skin hardening took place quite
rapidly with me, but he insisted that since I no longer
have the skin hardening in the areas I previously did,
that I have limited SD.

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#4 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 24 January 2007 - 10:59 AM

Hmmmm, Susie,

That does sound strange to me...but who knows??

Warm wishes,
Heidi

#5 laurie906

laurie906

    Bronze Member

  • Members
  • PipPip
  • 15 posts
  • Location:San Diego

Posted 24 January 2007 - 12:46 PM

Hello,

I don't know if this helps or adds to the confusion. I also have sclero which is "restricted" to my skin. I first had symptoms in May 2006. In September 2006 I was diagnosed with Limited sclero. By December it has progressed (I would call this rapidly) to cover Fingers to shoulders, toes to hips, collarbone to cheeks. My doctor changed the diagnosis to Diffuse. Although it's currently not in my internal organs (we've completed every test!) My doctor is not convinced it won't travel there. I mentioned that each site I visit, for souce of info I find has different definitions, but he believed that if skin involvment goes past the elbow and above the ankle, it's diffuse.

Susie, if you feel comfortable, may I ask how fast your skin tightening progressed, over how may months or years? Can you estimate how long it was tight before you noticed softening? How is you range of motion changing now that your skin is looser? Are you getting better ROM in your hands or just skin softening?

I know there are three stages of the skin part of sclero but can't seem to get an estimate on how long each stage lasts. My doctor feels I'm in the 2nd stage, he called classic (initial swelling is down but skin is still tightening) I feel I still have swelling but...I know everyone is very different with sclero. My doctor says classic could last for 3 - 15 years. Not a narrow estimate. And that during this time preserving the ROM (range of motion) is critical. One of the problems with treatment is not knowing what each patient is going to go thru.

All my hopes are with you,
Laurie
Laurie906