Jump to content


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


Photo

Does Anyone On The Board Have Sine Sclerosis


  • Please log in to reply
10 replies to this topic

#1 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 09 May 2007 - 03:23 PM

I was just curious who else other than me, on the board, has sine systemic sclerosis, which is systemic sclerosis without skin involvement.
Thanks,
Jennifer

#2 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 10 May 2007 - 08:15 AM

Hi Jennifer ,

Last fall, that is what they initailly diagnosed Gareth with, but now they are saying UCTD because he doesn't have skin involvement or Raynauds. I think you have Raynauds, don't you? Gareth has the fatigue, esoph. dismotility, restrictive lung disease, and pos. blood work. To be honest, I don't think it matters anymore because it seems everyone's symptons are so different that doctors really aren't too sure what to call many of their patients.

Take care, Everyone.
Margaret

#3 Clementine

Clementine

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 10 May 2007 - 08:57 AM

Margaret,
Thanks...and yes, I did not forget about Gareth having sine form. I think about the two of you often. I definitely have Raynauds, although unless I am in air conditioning, it's under control. I am just curious if others have lung involvement that are without skin involvement. I hope Gareth is doing well. You are a wonderful Mom and he's lucky to have you. It must be difficult for you.
I hope Gareth's condition is diagnosed sooner than later. How are his lungs lately?
xo
Jennifer

#4 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 10 May 2007 - 09:16 AM

Jennifer,
Other that "systemic", my rheumatologist can't tell which type I have. I don't have any skin involvement anywhere which would indicate sine, but I guess since during year one I did have it on my fingers and back of the hands, that would rule it out. The skin on my hands softened once I was put on methotrexate and I've had no other skin involvement. On each visit, my rheumatologist searches. He pulls at the skin on my hands, my arms, back, face, chest and then just shakes his head and says "You still don't have skin involvement. You're strange." Well, we both agreed to the latter a long time ago. :D
So I don't think I have sine, but I may. :blink: Who knows?

Big Hugs Darlin'
Janey

#5 Clementine

Clementine

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 10 May 2007 - 11:49 AM

Janey and Margaret,
I have a great article that my Dr. just emailed to me, which was posted in Chestjournal.org. You must pay to read it, but I have the free version if you want it. It is specific to systemic sclerosis sine scleroderma. I am patient #6 of the 6 patients studied and three of my doctors were in on the article and study.

Jen

#6 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 10 May 2007 - 12:26 PM

Well I have CREST but I dont have skin involvement. Well the skin on my fingers get tight but it doesn't stay that well. Well they swell up in the heat and it the morning. My biggest issue is being tired and sore all the time. I do have ulcerative colitis and GERD/Refux, osteoarthritis, and fibro and hital hernia. Sam
Sam

#7 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 10 May 2007 - 02:30 PM

<<I have a great article that my Dr. just emailed to me, which was posted in Chestjournal.org. You must pay to read it, but I have the free version if you want it. It is specific to systemic sclerosis sine scleroderma. I am patient #6 of the 6 patients studied and three of my doctors were in on the article and study.>>

Jennifer ,

WOW....in a study, huh?!?!? Most people would be proud of such an honor....too bad yours has to do with this funky disease!!! I would love to read it....how? Do you have it online that I could download it?

As for Gareth, well, he turned 19 today!!! I got him one of those small, 3 prong hand massagers and told him to put it on his chin and face. He is always grabbing at his chin area and cheeks.....drooling is bad, too. He's got those white calcifications coming in his lower lip. He enjoyed the sensation and took it to bed with him.....massaging his chin. He has no voice most days and struggles to get a whisper out. That is soooooooooo frustrating for everyone!!! As for his lungs, he tries to do basketball and tennis but gets so winded quickly and has to use his asthma inhaler. We are getting ready for another round of blood work from his local rheumatologist. He also wants another PFT done. I will keep you posted.

Take care, Everyone.
Margaret

#8 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 11 May 2007 - 04:40 AM

Happy Birthday Gareth!

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#9 Clementine

Clementine

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 11 May 2007 - 05:08 AM

Oh Margaret,
I hope Gareth gets better and I hope he had a happy 19th.
Must be hard not being able to communicate so well.
If you would like a copy of the article I can email it to your regular email address. It is a study of 6 patients with systemic sclerosis sine scleroderma (proper name) and their antibodies. I think you will find it interesting and if not, your Dr. may. It was written by well established doctors.
Thanks,
Jennifer

#10 lori2395

lori2395

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 15 May 2007 - 04:19 AM

Hi, my name is Lori, and I haven't posted in a while, but, I would be interested in receiving that info via email. Thanks so much.

#11 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 16 May 2007 - 06:24 PM

Hi, Lori. Glad to see you back and posting. :)
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)