Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

New to site - generalized morphea diagnosis


  • Please log in to reply
10 replies to this topic

#1 KATHY RAMSAY

KATHY RAMSAY

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 03 June 2009 - 09:04 AM

I don't know if this is where I am supposed to be posting about my self or not. I am new to this site. I have just been diagnosed with generalized morphea scleroderma about 2 months ago after 4 years of going to doctors. I have brown patches all over my body except my face. (knock on wood) and hopefuly it will not spread there.
I am freezing and tired all of the time. but still working. I am so glad to have found this site. I have learned more from this site then any doctor I have been to.

#2 jefa

jefa

    Platinum Member

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

Posted 03 June 2009 - 10:30 AM

Hello, Kathy and welcome to the Forums. We were happy to have you join us in chat tonight. Quite a few of our members have been diagnosed with morphea and hopefully they will be able to help you with some of your questions or compare notes. In the meantime, please feel free to read our page on Generalized Morphea.
Warm wishes,
Jefa

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

International Scleroderma Network (ISN)

#3 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 03 June 2009 - 12:25 PM

Welcome to the ISN forums Kathy, I hope we have much to offer you and that you make many friends here and can let us know how you are dealing with your morphea.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 04 June 2009 - 12:53 AM

Hello Kathy

Welcom to the forum and quite right you are too commenting that you've learned more here about your disease than anywhere else. I am of the opinion that this site is the best place to learn about scleroderma whatever form you may have.

My diagnosis is now diffuse cutaneous systemic sclerosis with a morphea overlap, greedy me I want it all I tell you! The morphea is mainly now on my upper arms and is sorta yellowish with a pinky purple border. Totally painless and doesn't itch that much any more, hooray!

I also have bullous morphea which I believe is rather rare (I don't do common garden variety diseases, it must be exclusive). It blisters and the large blister is on one shin that grows everyday and a very small one has appeared on the other shin. Have you ever had blistering or encountered anyone else who does?

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 KATHY RAMSAY

KATHY RAMSAY

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 04 June 2009 - 04:20 AM

Thank you all for making me feel so welcome! Boy Amanda it does sound like you are greedy! :blink: I am so sorry that you are going through all of that. Makes me feel stupid for feeling sorry for my self. I have not had any blisters, just spots all over. and sensitivity to cold. and fatigue.

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 04 June 2009 - 04:42 AM

Hi Kathy,

You are in the PERFECT place...so glad you found us!

I also would like to take this opportunity to welcome you here.

There are many wonderful folks who come here...for the same reason you are here...to gather information in regard to our illnesses, as well as support each other.
Many of us make new friends...of course, you will find that we are really just one big family and really care about one another!

Glad to see you posting!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 04 June 2009 - 04:49 AM

Thanks Kathy! We are all entitled to have our moments of self pity, we just don't stay there and I've no doubt you won't either. We're a tenacious lot and glad to have you on board.

If you're interested we have a page on the world's first virtual pity party for humour and on a more serious note a page about emotional adjustment. Whatever form of scleroderma you have it takes adjusting to.

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)

#8 KATHY RAMSAY

KATHY RAMSAY

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 04 June 2009 - 05:35 AM

Thank you Amanda and Susie, I have known for two months what I have and was handling it ok till I went to San Francisco this week to see a specialist.

I guess I was expecting too much. I felt like it was a waisted trip because I didn't find out anything more than I already know. She just said yep you have morphea and if you get worse or want to come back in a year that will be fine and ever since then I keep bursting into tears for no reason.

Thanks for the Hugs

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 04 June 2009 - 08:23 AM

Hi Kathy!!!

Welcome! I'm so glad you've joined us. I really look forward to knowing you better. I saw you in Chat the other day, but I think you were having difficulties figuring it all out, so I didn't get a chance to talk with you, but will!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 05 June 2009 - 10:25 AM

Hi Kathy,

I wanted to welcome you to the Forum too. I'm sorry you got sort of a brush off from the specialist. I'm never sure if it's because they don't really know a lot about the disease or whether they think we probably already know all the 'important' things. Most of us do so much research on our own that we could offer Continuing Medical Education classes. :D

Hmmm, been there, done that on the tear thing. Annoying, isn't it? All sorts of things would set me off. I can tell you it almost always gets better (I never say 'always' since I gained 10 pounds on a guaranteed weight-loss programme), but there are some things that can help you now. Check out our Emotional Adjustment and Scleroderma for some really good tips on coping, etc.

In the meantime, have another warm ISN hug and my best wishes,
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

#11 KATHY RAMSAY

KATHY RAMSAY

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 10 June 2009 - 07:24 AM

Thank you all for your comments. And the warm hugs. We do not have a support group where I am so it is nice to be able to come on here and talk to others that are going through the same things.

I think I am finally getting over my pity party (well this week anyway) After reading all of the problems that all of you are going through I am feeling pretty grateful that mine is not that bad and can still function quite well and pretty ashamed of myself for feeling sorry for myself. You all are real inspiration.

Thanks and warm hugs to you all
Kathy