Scleroderma Support Group

Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.

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Gardener21 08/31/2010

Hi, friends,

I have today filled in the "About Me" on my profile. So, if you want to go look, you'll see why I am on this forum. I hope other members, too, will feel free to fill out how scleroderma is affecting them in their own profiles so that we can see the range of effects, and make it more fully evident to researchers the full scope of how scleroderma can affect people.

brunob 08/31/2010

Wow, I thought my dx was complicated. How do you keep track of it all?
Wishing you all the best and hoping you have a glorious day

hugs and peace
Beth

Gardener21 08/31/2010

Yeah, it was so complex I had to start keeping copies of all the lab results. If I hadn't, I'm quite sure I would still not be diagnosed. Apparently I have at least 3 different autoimmune diseases (Hashimoto's, and Sjogren's in addition to scleroderma) so that is confused the docs for so long. But Hashimoto's and Sjogren's do tend to go along with scleroderma, as I've learned.

It was the off-the-chart high anticentromere antibodies and the nailfold capillary changes that were the final tip-off that this is scleroderma.

deleted_user 08/31/2010

I got my tests back today and they were all normal except for one is that was borderline. After reading some of your symptoms I am like OMG I have so many of those. Im worried about my neck the most right now as Im having trouble breathing and swallowing. Last night I did my light therapy on my neck and I had some very strange sensations after I stopped.

By the way I have done some more research on the light therapy and it is insurance reimbursable. Heres a link to another website. Its a company again but I think you will find it interesting.

http://www.emersonww.com/

Gardener I swear by this therapy and I have the cheapest one money can buy. I submitted a request to my doctor to see if he would submit a claim for me to buy one.

Gardener21 08/31/2010

JulieAnne,

I hope you find out what is wrong. Knowing something is wrong, and not knowing for sure what it is is the hardest thing of all.

deleted_user 09/01/2010

Thanks and I'm sorry for what you are going through. I hope you get some relief soon.

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