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Roll call! Scl-70 and symptom free - One year follow-up


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#1 Elizabeth28

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Posted 23 May 2010 - 02:12 AM

Greetings!

It was just over one year ago that I first posted on the Sclero.org forums concerning my having been found to have positive ANA and Scl-70 (1.6 and then 1.3) levels. Since then, I have been overwhelmed by the kindness and generosity of fellow forum members, as well as non-members who were able to read my posting and respond by email.

I've been interested to note how many Scl-70 positive forum members and online correspondents either have mild/minimal symptoms of a connective tissue disease, and have not been diagnosed with either limited or diffuse scleroderma, or have no symptoms at all. Given that, after two head-to-toe rheumatological check-ups since January 2009, I continue to have no identifiable symptoms of scleroderma, I'm writing again to see if we can do a 'roll-call' of how many of us have positive Scl-70s and no symptoms or diagnosed disease?

Perhaps we can also do a 'hands-up' of individuals who have tested positive for other auto-antibodies associated with scleroderma - such as ACA (anti-centromere) - but who have either no symptoms or have yet to be diagnosed?

All best wishes to everyone,
Elizabeth

#2 Shelley Ensz

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Posted 24 May 2010 - 10:09 AM

Hi Elizabeth,

I'm thrilled that you have made it another symptom-free year and send you my congratulations!

It just happens sometimes that people have positive antibodies but never develop any related disease. In fact, because it happens so often, blood tests can never be relied upon for diagnosis of scleroderma; the focus remains on clinical symptoms of disease.

It's probably a bit less frequent for people to have antibodies but no disease, and much more common for people to have scleroderma but no antibodies, or to have antibodies show up only late in the game after the clinical diagnosis is already made. So you can see, either side of the coin, all that really matters, in the end, is the symptoms.

I'm trying to think of a situation this might be like. Okay, for example, I am tuberculin positive. When this was discovered, over 40 years ago, they evaluated me and my family for tuberculosis at a TB sanatorium. It turned out my mother and I were both carriers but had no active disease. However we were warned that it was possible for TB to become active again at any time, especially if we were sick or under stress. We took what was then experimental treatment, and had to have chest x-rays every six months, for a long time.

Neither my mother or I ever got tuberculosis. But we had to stay concerned enough to cooperate with the follow-up program, just in case. Much like you may have follow-up for a few years, and likely, nothing ever come of it.

Of course, TB infection is different than a positive antibody, which could arise from either serious or harmless things. Anyway, from that, I think I understand what you are going through. Good for you on not having any symptoms, but bad for you to have to even suffer the question of scleroderma.

So here's a warm hug, just for you! :emoticon-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 piperpetpete

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Posted 24 May 2010 - 12:32 PM

Hi Elizabeth,
I too have been dealing with positive SCL70 antibodies since it was discovered last April '09.

I ended up going to a sclero specialist in Alabama who stated my symptoms seemed to be neuro related. I then went back to my rheumatologist who thought it might be fibromyalgia and suggested Lyrica. I was having burning pain all over. The Lyrica seemed to work as I am no longer having any burning symptoms. I do have Raynaud's but it is very mild. I've had that for 14 years.

I am very blessed as of right now and just continue to enjoy my life each and every day. Since I have had an autoimmune disease, ocular myasthenia gravis, since 1989, which has been very mild in itself, I know I could develop active scleroderma. I just take it one day at a time! So happy to hear you are doing well!

#4 Amanda Thorpe

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Posted 25 May 2010 - 03:15 AM

Hello Elizabeth

Congratulations to you! May you never become one of us! :lol:
Amanda Thorpe
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#5 Elizabeth28

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Posted 30 May 2010 - 07:40 PM

Dear Amanda,

Truthfully, I have learned so much about this disease - and also gained so much respect and admiration for everyone on the boards - that even if I develop the disease, I have hope that life can still be lived, and my goals and dreams still achieved...

For this I am very grateful.
Elizabeth

#6 Amanda Thorpe

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Posted 31 May 2010 - 07:36 AM

Elizabeth you sound like a sclerodermian! :lol: You're absolutely right there is still good life to be had after scleroderma, it just looks nothing like you thought it would but that's not necessarily a bad thing!

Take care and keep posting.
Amanda Thorpe
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#7 betty32506

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Posted 31 May 2010 - 03:17 PM

I am glad to see things are going that well.
The last several years I have been tested for Scl-70. Sometimes they are positive and sometimes negative. I don't think I have symptoms that we can attribute to scleroderma. I don't know which tests are related. I have tested positive for lupus and the rheumatologist told me I don't have lupus. She wrote to my general practitioner that I do. Go figure. I think she doesn't know what I have. Thankfully none of my problems are extreme. I have been diagnosed with Raynaud's, Sjogren's and tested positive for a few other things. The good news is no RA.

Betty

#8 candlewood

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Posted 20 June 2010 - 12:05 PM

Hi, Elizabeth. Congratulations to you and me both. I, too, was found positive for SCL-70 in January 2009 with a count of more than 8 (as the test only goes up to 8) and had an interesting year. Last year I had significant joint pain, especially in my hands, feet, knees and hips which was what made my general practitioner have the test done in the first place. I went through one bad rheumatologist and am now with one who I think will be good. At least he prescribed some baseline lung function tests and made note of my fluctuating blood pressure.

This year's blood test showed SCL-70 still at more than 8, and the rheumatic factor up from 15 (very very close to normal) to 17 (a little farther from normal, but still close). I have some very slight thickening on my toes, and sensitivity to the cold which is new for me, but no discoloration of the skin when it's cold.

I have one question, though. When the SCL-70 count goes over 8, (where the test they are using on me stops) is there any test that shows how far over 8 it is? And is there any benefit to knowing what it actually is?
Good luck to you, and here's hoping we have the same news for each other next year!