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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Lucy H

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Posted 16 February 2009 - 05:16 AM

Hi PJgirl and others,

This is my first time on this or actually any blog/forum. I certainly understand how frustrating this is. These autoimmune issues are so vague and nondescript in terms of exactly falling into a category that it's hard to know exactly what is going on. Last week I went to a rheumatologist for the first time because I told my internist I had Raynauds and she ordered an ANA test which showed a number of 1:1280.

The rheumatologist said that I am probably in the very early stages of CREST. My symptoms don't fit that diagnosis and I really wish I understood more. I am a concrete thinker and am most comfortable with black and white answers. I am 48, in relatively good health and my symptoms are new.

In addition to Raynauds I have joint pain in my fingers and toes (it's hard to hold a blow dryer and other stuff like I used to), my legs and hips mildly ache (all other muscles and joints are okay). I had a hysterectomy a few years ago and my rings had to all be resized afterwards because my fingers kept swelling; but they are not continuing to swell and they are not inflamed like with arthritis. He said none of this really goes with anything related and I should just take ibuprofen as needed for the discomfort. I don't know why I all of a sudden have aches like this. The only other thing I have are dry eyes and I tested negative for Sjogren's.

All other symptoms of CREST are not present. Nail beds good, no skin or esophagus issues. I guess when I saw your posting it confirmed that this is not an exact science. He basically said that I should be glad I just have Raynaud's, he didn't give too much notice to the joint pain or dry eye issue, and I should just live my life and hope that nothing progresses. My mothers twin had scleroderma and it was devastating. Do these things develop quickly?

I am an upbeat person and I am not obsessively stressing about this. My family doesn't seem to be stressed about it, but here I am on this website looking for someone to commiserate or give me feedback. Should I put this all out of my mind, has anyone had any experiences that can shed some light. I'm not even sure what to ask.

Lucy

#2 LisaBulman

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Posted 17 February 2009 - 06:58 AM

Hi Lucy,

Welcome to the forums!! You are here and you posted!! You'll get the hang of it...the more you post the easier it will become.

Getting a diagnosis is step one. Looking at the bright side of things you have doctors who are listening and running tests. Many people go years without even a simple test or a doctor who doesn't think they are crazy. You may never develop another symptom but on the other hand you might. This disease is so different from one person to the next so it is hard to say what might happen, when or how fast or slow. I know it is easier said than done but I would go on living like you are now but just be aware of your body and any changes you might be feeling.

We are all here to support you and answer questions you might have.

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
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International Scleroderma Network (ISN)

#3 janey

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Posted 18 February 2009 - 01:08 PM

Lucy,
Welcome to the ISN forums! I'm glad you decided to post and tell us your story. I do agree with Lisa. It's so important to just "go on living like you are now but just be aware of your body and any changes you might be feeling." Write everything down that isn't right and when you see a doctor, take the list in. If things are connected, a pattern could start to emerge.

You mentioned that one doctor said you might have the start of CREST. I'm providing a link to our pages on CREST syndrome. Because CREST is a type of limited scleroderma, it usually progresses slower than diffuse. Also, it only takes 2 of the 5 complications to be diagnosed with it and one could never develop a third. So since the nailbeds look good, no esophageal stuff going on, and good skin - things sound good. Your doctors do seem to be on top of things, so just keep the channels open so you have their ears when something new develops or something gets worse.

As far as the joint pain is concerned, there are so many things that can cause that. There are also ways to help reduce it. Here is a link to our pain management page. What works for one doesn't always work for another, so just try some things and see if it helps.

Again, welcome! Please keep us informed on how you are doing and any further outcomes of tests and doctors visits. We're here for you!

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#4 smac0719

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Posted 18 February 2009 - 01:25 PM

Welcome Lucy! I too found the site in search of answers. Lisa and Janey have provided you with good information and I can only add to take one day at a time.

You'll find everyone has a different story, but there is usually someone who has experienced all or some of what you are going through. If not, you'll just find some good folks to vent to.

I have been diagnosed with Scleroderma since 1/07 although my symptoms began Fall 04. They began with fatigue and pain in my hands and feet. I have also developed Raynauds and Sjogrens since then and both within the last year.

It is my wish that you do not develop more symptoms and that you are able to find a good network of physicians and have continued support from your family and friends.
I may have Scleroderma, but Scleroderma doesn't have me!