Jump to content


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


Photo

What's in the name ?


  • Please log in to reply
4 replies to this topic

#1 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 17 April 2013 - 04:20 AM

Hi Shelley ,

 

I decided to get off the Plaquenil topic and into the name game.  Gareth's old rheumatologist and primary care physician had him listed with UCTD.  I thought his new rheumatologist also felt the same.  When I took him to the new Pulmonary doc (different medical group than the Rheuma) he has him listed as Mixed Connective TD.  Yesterday, while at the new Gastro doc (same medical group as Rheuma), I noticed he is listed as Diffuse CTD.    I suppose it doesn't really matter as long as the symptoms are being treated?  Last night,  I tried to read and figure out the differences but my brain didn't get very far!!

 

I did read where Sjogren's can cause havoc on the esophagus and stomach, too.  I didn't know that.  He's developed that over the past couple of years, too, on top of the positive blood work for Sclero and residual esophageal dysmotility.

 

He is scheduled for an Endo and Colonoscopy in May.  It's been two years since the gallbladder surgery and the new Gastro doc wants her own look at his insides. When she asked Gareth if he hurt, he did nod *yes* and pointed to his stomach.

 

Take care, Everyone.

Margaret

Mom to Gareth, 24 years old, DS/ASD



#2 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 17 April 2013 - 04:37 PM

Hi Margaret,

 

Well, that certainly is confusing enough! 

 

I suppose the only way to get to the bottom of this is to ask his new rheumatologist exactly what his diagnosis is and then try to make sure everyone is on the same page.

 

: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.

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 02 May 2013 - 07:09 AM

I think they throw these terms out all over place. In reading my chart notes over the past 14 years, so many different terms are used. I think in some cases it doesn't really matter, but it certainly makes it confusing if you needed to share the information with someone else or even worse the disability system.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 02 May 2013 - 02:40 PM

Hello Margaret

 

Good grief, it's hard enough as it is without grappling with different diagnoses! I am sorry Gareth is still having so many problems, please let us know how the endoscopy in May goes.

 

Gareth, I hope you feel better soon. :balloons:  :emoticon-hug:  :emoticon-hug: :emoticons-group-hug:

Take care.


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)

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 03 May 2013 - 11:23 AM

Hi Margaret,

 

I have to agree with Sweet in that it seems to me that it is pretty common for doctors to bandy terms about like crazy, and not necessarily use them correctly, either.  In my own experience, I think a lot of doctors use the following terms interchangeably: autoimmune disease, connective tissue disease, UCTD, MCTD, mixed connective tissue disease, arthritis, disease of connective tissue, diffuse connective tissue, systemic (anything), and overlap syndrome,

 

Up to a certain point, it doesn't matter too much. That's because rheumatologists don't consider it all that important. They have a slogan, "You feed all dogs dog food." Which we can hope doesn't mean they consider us to be dogs! :emoticon-dont-know:

 

What they mean by the phrase is, no matter what rheumatic disease a person has, all the symptoms are treated the same.  So, with that reasoning, it doesn't matter much whether or not the patient is diagnosed with any particular thing.

 

However, scleroderma experts and patients would probably beg to disagree with that, since scleroderma needs to be treated differently. For example, steroids are commonly used to treat rheumatic symptoms, but they can cause sudden kidney failure, and other problems, in scleroderma patients and should be avoided unless there are absolutely no other alternatives. And with the newer biologic drugs it also matters a lot that the correct disease is being treated. So we can hope that line of reasoning will fall into disuse.

 

This is where being an aware and educated caregiver will probably come to Gareth's rescue over and over again, Margaret. You know his entire medical history but most doctors treating him will have only glanced at his chart for a few seconds.  You are a priceless asset to Gareth, both as a mother and an educated caregiver.

 

: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.