Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Rapid progression of symptoms


  • Please log in to reply
3 replies to this topic

#1 LMS

LMS

    Bronze Member

  • Members
  • PipPip
  • 25 posts

Posted 02 June 2008 - 01:22 PM

I am highly positive for the centromere pattern. I know this is indicative of limited, but my sympotms are occuring quite rapidly ie Raynaud's, skin thickness on hands and feet, skin tightness on face, decreased lung function DLCO, FVC, TLC. all of my symptoms occurred within weeks of each other.

Is it possible to have diffuse disease even with the centromere pattern? I am African American and I know based on the reasearch I have done the disease tends to be a little more aggressive. Please help.

My Rheumotologist and Pulmonologist are very close to a diagnosis but want to wait for a few more tests.

LMS

#2 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 02 June 2008 - 02:20 PM

Hi LMS

It sounds like you are having a rough time just now. I hope things start slowing down and improving for you soon. Yes, I understand that the centromere pattern is also indicative of Limited/CREST but I don't know the answer to your question. Sorry I can't help more.
Sending good wishes your way!

#3 anonym4444

anonym4444

    Senior Bronze Member

  • Members
  • PipPipPip
  • 49 posts

Posted 03 June 2008 - 11:30 AM

Hi,

I am somewhat of a newcomer claim, that I ave read a lot of material on the web on both German and Englisch spoken sites...

On one hand I do not want to discourage you...but on the other you look for an answer...

While there are some sites that very clearly put CREST/limited with anti-centromers in one category and difffuse with Anti-SCL70 there are more scientific sites where you see, that this is in no way so clear. There are certainly people with the oppostie constellation...it is just the majority that fallis default pattern ... and as everything with this disease...it is not having any features that you take for certain among all affected...so your progress sound s certainly a bit uncommon from the normal descriptions (Raynaud for a long time before onset in limited...) of the limited form. But in the end you can only tell when you know what else happens. So do not worry too much.

K.

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 03 June 2008 - 11:49 AM

Dear LMS,

I am sorry to hear of the rapid progression of symptoms you are experiencing. Please keep in mind I have no medical training, and verify everything I say with a reliable medical source.

With your combination of antibodies and symptoms, plus the tendency for scleroderma to be worse in African-Americans, I would really urge you to see a scleroderma expert for prompt diagnosis and the best possible treatment, if it is at all possible for you.

It is my understanding that the antibodies don't matter as much as the symptoms do, for the classification of systemic scleroderma. And either form of systemic scleroderma (limited or diffuse) can affect any part of the body (internal organs) or have a rapid or lingering pattern of progression.

I'm sending some extra hugs your way!


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.