Everyone is different. After at least 25 years of autoimmune symptoms, I was finally diagnosed with limited systemic scleroderma last August 2010. I still have no skin hardening, so apparently that's why diagnosis took so long. Unfortunately not all doctors recognize that sclerosis sine scleroderma is a valid subset of limited systemic scleroderma. At this point I do have the heart muscle stiffening, GI tract problems (food lingering in the lower esophagus, alternating constipation and diarrhea), some liver inflammation, and pulmonary venous hypertension. I have many other things consistent with scleroderma also, like Raynaud's, hair loss, nail capillary vascular changes and telangiectasias. My anticentromere antibodies are sky high.So even without skin hardening a person can be very affected by this disease!

I hope you can find good care.

I don't have skin involvement either. My PFT's and echo were normal. Reading the internet can be frightening, try to go with your own experience and find a good sclero specialist. Mine recommends staying off the internet because it is so scary. (obviously I do read about it, but I don't worry too much either)

Megan, other scleroderma specialists say "knowledge is power" in this disease. See this article http://www.scleroderma.org/medical/r&t_articles/Shapiro_2002.shtm .

I have had the symptoms of this disease since at least 1985. If I had not researched it on the web and found out what antibodies to ask my doctor to order (based on my prior ANA staining patterns), I would still be undiagnosed. As it was, I didn't finally get diagnosis until last year, by one of the nation's top scleroderma specialists.

By the time I finally got a doc to check my anticentromere antibodies, they were so high they were almost off the chart, and just a few months later, they WERE off the chart, and have been so since.

So I have to disagree with your doc about staying off the web. My ANA staining pattern was: speckled, nucleolar, and anticentromere, depending on the test date. By reading the web I learned that together with my symptoms, these antibodies most likely pointed to scleroderma. My SCL-70 was negative, so finally when I had a Raynaud's attack right in front of one of my docs, I had to insist on an anticentromere B test. If I hadn't, I'd still be undiagnosed.

But now the specialists have determining that I have heart muscle stiffening, and my pulmonary venous hypertension is being closely monitored. Had I not taken myself to a specialist because of the antibodies, I would still simply be wondering why I huff and puff trying to keep up with my husband on walks.

The main thing is to be careful that you stick to reliable sites for information. Scleroderma.org, the inspire.com scleroderma forum, and the sclero.org sites have a lot of good information.

yes i read the internet and also went under deep depression i was real scared.....but i dont anymore yes i heard it is rare

I used to believe knowledge is power but I also realized that no amount of understanding can change something if I am terrified and believe there is no hope.

I too did the same thing when I was diagnosed with diffuse systemic scleroderma in 2006 at Mayo. I was told by my doctor that I needed to stop chasing medications because the meds can damage more than they can help at times. And I have heeded his advise.

After the first 2 years of being in constant pain, I stopped taking all the toxic meds and just tried to keep my blood pressure stable. I started going to homeopathy, therapy, 12 step groups, working on my diet and exercise, meditation and my spirituality.

As I understand it there is a mind body connection to most auto-immune illnesses and I wanted to be proactive on a holistic level. I wanted to stop living in fear and realize that IF these symptoms happen I can deal with tthem as they happen....Not anticipate that they will happen.

My support people remind me that I can get better and "progressive" does not mean it will be that way.

I am 6 years into my disease and I can tell you that I have regained the use of my hands to at least 75 percent usage. My hands are a little darkened on the skin but are soft and capable of doing most things. They are not curled or crippled. I can dance and go for walks with my beloved yorkies and do most things as I used to. I stopped limiting myself by "expecting" all the scientific facts I read about to come true.

Perhaps foolish, perhaps it is all a placebo effect? But I will take my foolishness over cold hard facts any day, because today I am basically doing well.

If I expect to not get well, I probably won't. If I believe there is no hope, there probably will not be. So what does it hurt to be happy and positive and stop looking for things to go wrong with my body? Be proactive around health and happiness not all the minute details of what I can not control.

This has changed my life for the better. I truly understand what living one day at a time means.