Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Undifferentiated Sclero?

  • Please log in to reply
4 replies to this topic

#1 Mickikid



  • Members
  • Pip
  • 2 posts
  • Location:Cape Cod, MA

Posted 10 October 2010 - 02:06 AM

So this is my 3rd diagnosis in a year. starting with a new team at BU Medical...and this is the best they can come up with?! Starting completely from scratch...new bloods, new xrays, new MRI's...ready to stick forks in my eyes. I feel so utterly defeated. First diagnosed August 09 with RA, then CREST, now undifferentiated... I wish they would make up their mind before I lose mine.

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 10 October 2010 - 05:25 AM

Hi Mickikid,

Welcome to the Forum! I'm sorry you are being driven crazy by the different diagnoses. Are they saying now you don't have RA or CREST? It's entirely possible to have more than one autoimmune disease going on at once and Undifferentiated Connective Tissue Disease (UCTD) simply means that the patient has symptoms of more than one connective tissue disease (a key word here is 'overlap'). We have a section on UCTD if you'd like to read more about it. Another good section is Difficult Diagnosis. It is crazy-making, but don't let it get to you. I think most, if not all of us, have gone through something similar.

So, do you have a good rheumatologist? And are you receiving treatment? I hope you'll post again and let us know how you are getting on.
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 10 October 2010 - 07:25 AM

Hello Mickikid

I'm with Jeannie a diagnosis is a diagnosis, it means that medically they know what they are treating and how to treat it as opposed to someone with no diagnosis.

UCTD is still a connective tissue disease like CREST (aka limited scleroderma) so essentially that hasn't changed you just may have other things in the mix as well.

The important thing now is to have a good medical team including a rheumatologist that is a scleroderma expert.

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)

#4 Margaret


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,014 posts
  • Location:Pennsylvania

Posted 10 October 2010 - 12:06 PM

Hi Mickikid ,

My son was diagnosed 4 years ago with sine Scleroderma (by the gastro doctor and primary care physician) and it was later changed to UCTD (by the rheumatologist) because he had no skin issues - all internal involvement. He was started on Plaquenil and within 3 months his symptoms subsided. He's been on a pretty level road since then. No matter what it's called, get treated for the symptoms.....not the name.

Take care, Everyone.

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,282 posts
  • Location:Minnesota

Posted 11 October 2010 - 11:48 AM

Hello Mickikid,

Welcome to Sclero Forums! Don't worry, the first five to ten years are usually a wild trip of diagnoses that can change with every doctor's visit. Just pick the doctor/center you feel the most comfortable with and stick with them, as it will likely be quite awhile (years) before their diagnostic whimsy settles down. In the meantime, I recommend telling people you know that you have "arthritis" because all these things fall in the arthritis family and many people understand the term. Whereas when we say things like scleroderma or connective tissue disease, or something similar but different after every doctor's visit, it seems to raise a few eyebrows.
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.