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Rachelle

How Long?

14 posts in this topic

How long have all of you had this disease? What are the long term survival stats?

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Rachelle,

I was diagnosed in August 2003, symptoms started in October 2002; therefore, I consider this my fifth year. I've read a few places that with systemic, the worse happens during the first five years, so I'm planning for this to be it and be on a long downhill stretch of this roller coaster ride come 2008.

 

We do have a Prognosis and Mortality page for systemic scleroderma. The first article is a review of thirty years. It's quite interesting.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I was diagnosed this year with Sclero, but my symptoms started in 1994 with trouble swallowing.

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I was diagnosis with sclero in 1996 I am 42 now. I was diagnosis with raynauds when I was 21. I have had problems on and off over the years.


Sam

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Hi Rachelle,

 

I began with the most obvious symptoms in 2004, but it has taken for ever to get into a rheumatologist (1st appt was Monday) to have the more specific blood tests done. Last year was the first time I had even heard of ANA, and it surprised me that no doctor had ordered that test in spite of the fact that I've had OA since the age of 12. Once the official diagnosis comes it will be easier to figure out what's in store for me, but it looks like systemic sclero with possible polymyositis overlap. Another doctor said it sounds like lupus in addition, the symptoms starting back in '82, but we'll see. All I know is that everyone has a different course to run (gimp, limp, and waddle in my case--sounds like a law firm), so even if the doctor sets a time frame for me, the reality still might be very different.

 

Best wishes,

 

Elehos

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Hey Rachelle,

 

I've been diagnosed for 7 years, although at the time of diagnosis they stated I'd probably had it already for 3-4 years.

 

I see Janey gave you a great link. The outlook for most sclero patients these days is pretty good! Keep positive!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Rachelle,

 

I was diagnosed with Fibromyalgia and Sjogren's Syndrome in 1998 at the age of 41. In the fall of 2004 I had a major GI bleed- GI doctor diagnosis me with watermelon stomach after he did upper endoscopy. Watermelon stomach can go along with Sjogren's so I figured that's what it was. I changed rheumatologists in 2006 and he mentioned scleroderma, but he wouldn't really commit to it. I wanted to know so I went to Johns Hopkins in December 2006. I was diagnosed with CREST/limited scleroderma and it was confirmed that I also have fibromyalgia and Sjogren's. I didn't think to ask how long my rheumatologist thought I might have had it. When I asked her the prognosis she said that it varies with each individual and she couldn't predict it. Sorry I took so long to explain.

 

Nan

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Hi Rachelle,

 

My son, Gareth, is 19 years old and was diagnosed last November after we found his esophagus has stopped working. He also has mild restrictive lung disease, vocal issues, positive blood works, but no skin issues or Raynaud's. Right now, they are saying UCTD, probably sine Scleroderma.

 

Take care, Everyone.

 

Margaret

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My first symptoms showed up in 2003 and I still don't have a definitive diagnosis of scleroderma. I have inflammatory polyarthritis, osteoarthritis, secondary Raynaud's, GERD, hiatus hernia, and 'possible scleroderma' with skin involvement on the back of my calves, and starting on hands and face. I have had elevated CRP and ESR throughout, but negative RF and ANA.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Rachelle

 

I've had it for 25 plus years, I started out with morphea on my leg and it's now head to toe. I've been systemic for 24 years with heart, lungs,kidneys, GI, hiatal hernia and more. Just goes to show you that there is always hope.

 

I use to tell patients that came to me, that you have to make friends with the disease and learn to accept and live with each other. I know....it sounds weird, but it seems to work. And it's better than what allot of the doctor's tell patients

" go home and wait to die, there's nothing we can do for you " lol not me.

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I was officially diagnosis with CREST in 1997, but for three years prior to that I was first told I had rheumatoid arthritis (by my previous rheumatologist), the it was no you don't have RA , you have Lupus (same rheumatologist) Patted my head gave me NSAIDS and said see you next year. Well, I went to a new rheumatologist and in that was in 1997 and he gave me the diagnosis of CREST right off the bat, but that' about the only home run he's hit! I had to stop working in 2004. Now, I'm trying to find a new rheumatologist. In my mind I'm always thinking " what a strange long trip this has been" (now I'm showing my age! :P ) This website has been a godsend for me.


Peace :)

Barbara aka relicmom1

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Well, no one gets out alive....LOL....scleroderma or not, so I guess that's a good way to look at it. I hear about people living for decades with this stuff but I also know about the less fortunate.

 

I've had symptoms since 1995 I think but it didn't all hit the fan until 2005, when I was diagnosed. I have systemic sclerosis.

 

Please don't worry...easier said than done....because it can only make it worse. Mind, body and spirit...or so I'm told.

Love,

Jennifer

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