Jump to content


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


Photo

Just Tested Positive for Sclero?


  • Please log in to reply
8 replies to this topic

#1 sharonaykay

sharonaykay

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 26 April 2013 - 10:47 AM

Hi everybody,

I'm 19 years old, and a college student. For the past two and a half months or so, I've been having some pretty intense itching. If I remember it correctly, it started around the left armpit/breast/upper arm area just out of the blue around mid-Feb. Then, it became both breasts, though the left one more-so. It got to the point where I was so uncomfortable that I would come back from classes and fling all of my clothes off - bras were an enemy. At some point, I realized that I've been getting itchy everywhere. Hands and wrists were one of the first subsequent areas. The latest has been the stomach and back. After two months of itching, I've got little pock-marks on my skin from scratching. My mother gave me some anti-allergy medication over spring break, and that seemed to do the trick for a week or so. But then I came back to school, and they didn't seem to have much of an effect. Or if they did, the timespan the meds seemed to work was greatly shortened. I was very confused at that point, so I decided to go to one of the university health doctors. She said she couldn't figure out the itching, and decided to take a blood test. I was so sure it was scabies. My symptoms fit it to a T. But today, I just got the lab work back, and it says I tested 3.0 positive for SCL-70. I have made an appointment with a rheumatologist in two weeks.

I am very scared. Do my symptoms seem to match sclero? If they do, do they seem to match the diffuse type? I can't make myself believe that I have this.

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 26 April 2013 - 01:42 PM

Hi Sharonaykay,

 

Welcome to these forums!

 

I'm sorry that you have concerns about possible Scleroderma. Unfortunately it is a notoriously difficult disease to diagnose, not least because it can present itself in many different ways and affects everyone differently. A positive blood test for auto antibodies is by no means conclusive as it is quite possible to have a positive test and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. I have included a link to our medical page on itching to give you some more information but although itching can manifest itself in Scleroderma, due to the hardening of the skin, it can also be a symptom of many other illnesses as well.

 

Although one of my simple pleasures is telling my medical team how to do their job, I actually have no medical training and can't advise you as to whether you could be suffering from Scleroderma; however, hopefully your rheumatologist will be able to help you further when you have your appointment and he may then be in a better position to decide a course of treatment for you.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 marsha

marsha

    Silver Member

  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 26 April 2013 - 03:45 PM

Welcome Sharonaykay,
I am sorry that your test result have brought you here, but.. with that being said, you landed in just the right spot!! The people here are second to none, and can lead you in the right direction! The diagnosis can be a VERY scary one. But the one thing I have learned in the years since my diagnosis is you must take it one day at a time. And its true, we all may have the same disease but none of us present the same. Good luck at the Rheumatologist, and keep in touch
Marsha

#4 sharonaykay

sharonaykay

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 26 April 2013 - 10:09 PM

Thanks for your encouragement! Anxiously awaiting my appointment with my rheumatologist. It's great to get in touch with people who have sclero and still lead such fruitful lives.

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 27 April 2013 - 02:21 PM

Hi Sharon,

 

Welcome to Sclero Forums!

 

I really can't add much more than Jo and Marsha. And it's difficult to nigh impossible for us to comment on lab results as it seems everyone gets them reported out differently, depending on exactly what test is run and also what lab is used and what method they use to determine normal levels and positive levels. If yours showed up High (out of their listed Normal range) then it is important to be examined.  (Other people, please note, you could have a 15 on the "same" test but still be negative, if for example the Normal range is listed as 0-19; it depends on the exact test, lab and method used, and what they list as their Normal range, not on what you see posted in messages on this site or others.) 

 

As Jo mentioned, sometimes the tests are simply errors, or false-positive or false-negative, which is why a scleroderma diagnosis is supposed to be made by symptoms and not by lab work. I know how hard it is to even have the question of scleroderma raised.  It can be very discombobulating!  Some of us react by researching everything we can find on the topic, while others of us turn off the computers and throw ourselves into work or hobbies to be absorbed in other things until we get more answers.

 

:emoticons-group-hug:


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.

#6 Jac

Jac

    Bronze Member

  • Members
  • PipPip
  • 20 posts
  • Location:England

Posted 28 April 2013 - 09:16 AM

Hi there!

 

I'm fairly new diagnosed too and have found this website and forum invaluable for info and stuff and am getting my head round forum posting now.

 

It's a shock to get a diagnosis like this but a few weeks down the line I'm getting used to it and all it brings - folk here are great and I'm planning on asking loads of questions at some point :yes:  and I know they will help - you'll get the same no doubt!



#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 30 April 2013 - 03:59 PM

Hello Jac

 

May I welcome you to the forums on this post even though it's not your first? If I welcome you again on another post it just means you're popular not that I don't remember...

 

Hopefully I will soon be reading another one of your posts so take care and keep posting!


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)

#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 30 April 2013 - 04:02 PM

Hello Sharonaykay

 

Hello and welcome to the forums, I haven't much to add to what has already been said but I wanted to welcome you and remind you to let us know how your appointment with the rheumatologist goes.

 

Take care and keep posting.


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)

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 02 May 2013 - 07:00 AM

Hi Sharonaykay,

Welcome to the forums! Really glad you've joined us. I'm sorry for all that you have going on. It can be overwhelming, and difficult to understand, so my advice is to take one day at a time, and take time to process information. I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)