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Biomarker for Diffuse Scleroderma skin has been discovered!


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Hi! I'm Christy


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#1 Purr

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Posted 30 May 2008 - 12:52 PM

Hi everyone,

My name's Christy. I was diagnosed with scleroderma in July of '07. I also have lupus and polymyositis. Which were diagnosed at about the same time.

I'll give you more information about myself later. Right now, it's getting ready to let loose with a storm here in Central Indiana :o and I would rather not be on my computer.

More later.

Christy
Love makes the world go around!

#2 janey

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Posted 30 May 2008 - 04:38 PM

Welcome Christy,
Sorry to read about your multiple diagnoses of connective tissue diseases. I'm curious to hear about your treatment and how it's working for you and how you are handling things. Hopefully the storm didn't do any damage and you'll be back on line soon. You've found a group of very supportive people with lots of experience. This site also has hundreds of pages of information that could help you as well.

I look forward to learning more about you. Again, welcome!
Big Hugs,
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#3 Sheryl

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Posted 30 May 2008 - 06:33 PM

Christy, welcome to our humble group. The storm went through our area very quickly tonight. We had maybe a 10 minute rain which we needed badly. I am from lower Michigan so got a touch of the storm. I'm sorry to hear that you have so many disease working at once against you. I sure hope they are under control at the moment and you have some good doctors. I'm looking forward to learning more from you.
Strength and Warmth,
Sheryl

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#4 barefut

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Posted 30 May 2008 - 06:37 PM

Hi Christy,

I was born in Indy and have family in Central Indiana so I know how the storms can be out there.

Welcome to the forums and hope you get back to us soon. Looking forward to getting to know you.

#5 Purr

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Posted 31 May 2008 - 07:41 AM

Hello again!

I made it through the storm. We had 2.5 inches of rain in about an hour and lots of thunder and lightning (or is that lightening?).

I'm 60 years old, divorced for 38 years :), and have been retired for 4 years. I have 2 cats "who" are spoiled rotten. In '06 I worked a contract job and when it ended in March of '07 my health went haywire. I had an ulcer, completely lost my appetite because of nausea, had my gall bladder removed because they thought that was the problem, and between mid-March and late May I lost 30 pounds. I was in the hospital for 10 days while the doctors did tests to see why I was having so much trouble breathing. It turned out the was fluid pressing against my left lung, so they drained it and I started feeling better almost immediately!! They gave me an antidepressant for the lack of appetite and it did the trick. It took a while though.

When I was diagnosed with scleroderma(skin and gastrointestinal involvement) last July (lupus in June), I had been out of the hospital for about 6 weeks. I took the lupus diagnosis pretty well (I think) because my sister had it and I knew what to expect and the rheumatologist said it was much more treatable these days. The scleroderma diagnosis was numbing. It sounded like a death sentence. After I told myself to get a grip (with a kick in the pants from the Man upstairs), I started reading and found a book that really lifted my spirits. My outlook and attitude is much more positive, even after being diagnosed with polymyositis in September.

My rheumatologist is wonderful. She knew I had sclero the minute she looked at my hands and felt my lower arms. I never noticed my skin was hard!! My treatment is 1cc injection of methotrexate once a week. I'm also on prednisone, but down to 5mg once a day. Hoping to stop very soon. The treatment has helped tremendously. My skin hardening seems to have come to a halt and my muscles (from polymyositis) are much stronger. I can lift a bottle of dish washing detergent without any trouble now. I still get tired fairly easily, but have learned to take breaks or naps. Other than that, I lead a pretty normal life.

Sorry I'm so windy. I'm looking forward to making new friends, being helped, and hopefully helping others.

Christy

Please excuse the misspellings :rolleyes:
Love makes the world go around!

#6 Sweet

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Posted 31 May 2008 - 08:20 AM

Welcome Christy!!!



Really glad you've joined us, but sorry it's due to your multiple diagnoses. You'll love it here! I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#7 Peggy

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Posted 31 May 2008 - 02:11 PM

Welcome! I, like you, suffer with Sclero, Sjogren's, Raynaud's, Peripheral Neuropathy, and Polymyositis. Like you, when I received the diagnosis it was like being hit with a bat. After a year of appointments my diagnosis came at an appointment where for the first time my husband wasn't with me and the boom was lowered. I cried all the way home after she gave me the prognosis and what I had to endure in the future. I'm glad to hear that your method of treatment is working for you. They say we go into remission and then it comes back. Do you have any lung invovlement? Mine is upper GI and a great deal of skin involvement, fatigue, and terrible muscle and joint pain. I am presently doing IVIG therapy for the Poly and have my treatments 3 days this next week in the hospital.

Welcome again and warm hugs to you. You will find this forum great and a wonderful place to go to for information and support.

Warm hugs,
Peggy

#8 Snowbird

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Posted 01 June 2008 - 04:53 AM

Hi Christy

Glad you joined us too. I'm also glad to hear you have things under control!
Sending good wishes your way!

#9 debonair susie

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Posted 05 June 2008 - 09:12 AM

Hi Christy,

I'm pleased you have found your way to this scleroderma forum, as this is a great way to get a wealth of information concerning the very issues you deal with.

We all work very hard to support one another, as we all know how important each person is who arrives here.
If we have personal experiences to share with each other or things we feel might help, we post here.

We come to care about one another and hope you feel the kinship we all feel.

Hugs,
Susie
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#10 truman

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Posted 05 June 2008 - 01:02 PM

Hi and Welcome!

You certainly sound like a very up beat friend :lol: My friend was just diagnosed with polymyositis recently and I don't know enough about the subject to provide any information to her. She reads this site and hopefully will post and get to know others with this condition.

Welcome aboard to a ship of great friends, conversations, recipes, hope, advise and constant friendship!
Tru

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#11 Guest_Sadie_*

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Posted 05 June 2008 - 02:25 PM

Christy, Welcome to the board! This is a great place with wonderful people! You sure are dealing with alot of health issues. You will get good info on here and also good support!!
Sadie

#12 Purr

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Posted 05 June 2008 - 03:18 PM

Thanks everyone, for the warm welcome. I feel at home already.

Tru, I've been keeping tabs on the message your son posted. Glad to know you're doing better and I hope you will continue to improve rapidly. It's been about a year, but I remember just how it feels not to able to breathe.

Thanks again everyone.

Christyh
Love makes the world go around!

#13 Bunky

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Posted 05 June 2008 - 03:58 PM

Hi Christy and welcome to our forums. This is a great place for support and information. We're glad you found us!

Bunky

#14 kellyA

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Posted 15 June 2008 - 05:40 AM

Hello Christy,

My name is Kelly, Im 42 from NJ, diagnoised about 2 years ago, first time the dr. said it was not a big deal, even after a chest x-ray and showed no lung involvement, I went to Philadelphia for a second opinion (since I have an aunt and uncle with scler and poly..) I thought I better check this out further, sure enough I do have lung involvement after a CT scan it showed both lungs have inflamation no scarring, anyway I just finished 9 cytoxian treatments and everything is sable, I work full time for the state of nj, feel great, other than when I wake up a little stiff in the morning. ANyway, welcome...

#15 truman

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Posted 15 June 2008 - 05:47 PM

Kelly:

How are you doing? You mention your aunt and uncle with the disease. Brother and sister? I was always told this was probably not hereditary, but the more I've been reading and hearing, I'm finding multiple cases in families. After my last bout in the hospital, I had many of the symptoms I was told my father had years and years ago when I was just a baby. Have you learned anything on the hereditary possibilities?

Linda
Tru

It is what it is...........

#16 jefa

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Posted 15 June 2008 - 09:59 PM

Hi, Kelly. I'd also like to welcome you to the Forums, a fantastic spot for information and support from members like Tru. Christy, I can't recall whether I welcomed you before, but I feel like I know you already from your posts. Happy that both of you have found us.

Tru, while it is true that Scleroderma is not hereditary in the since that there is no direct transfer of the disease through genes, there are genetic circumstances which predispose the susceptibility to autoimmune disease. It is not uncommon to find family clusters of several different autoimmune diseases. Our page on Causes of Scleroderma: Genetics has quite a few articles which you may find interesting. Here is one:

Genetics and proteomics in scleroderma. Genetic, familial, and twin studies suggest that SSc occurs in genetically susceptible individuals. Recent high-throughput technologies, including gene expression profiling and proteomics, have accelerated the rate of information acquired on possible mechanisms involved in SSc pathogenesis. PubMed. Curr Rheumatol Rep. 2005 Apr;7(2):129-34.


Warm wishes,
Jefa

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#17 Karenlee

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Posted 16 June 2008 - 03:07 AM

Hi Christy,

Welcome. I was a regular member, but dissapeared for a bit so sorry for the late welcome. I'm so glad you found a competent Rheumatologist. That's priceless.

I also have a cat, her name is Shelly and she keeps me smiling.

Karen