Posted 19 June 2007 - 04:41 PM
Posted 19 June 2007 - 05:17 PM
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.
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Posted 20 June 2007 - 12:21 AM
Posted 20 June 2007 - 02:26 AM
Posted 20 June 2007 - 02:29 AM
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.
Posted 20 June 2007 - 09:17 AM
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!
Posted 20 June 2007 - 10:49 AM
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.
Posted 20 June 2007 - 02:02 PM
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.
Posted 22 June 2007 - 08:27 PM
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Posted 27 June 2007 - 08:38 PM
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.
Posted 30 June 2007 - 10:57 AM
Barbara aka relicmom1
Posted 30 June 2007 - 05:11 PM
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.