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Elizabeth28

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

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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

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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.

 

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


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

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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!

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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

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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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!

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Hi Elizabeth!  I know it’s been a long time since you have posted but I’m wondering if you ever developed scleroderma?  I am in the process of possibly being diagnosed and I, too, have no symptoms!  I have a positive ANA and I have Sclero 70 (1.6).  My Rheumatologist ordered a CT scan and the notes on it from whoever read it stated my lungs were perfectly normal, but my rheumatologist says that he sees something in the bottom portion of my lungs.  He wants to wait 6 months then re scan. So, of course, my emotions are all over the place.  

 

Anyways, I hope you are doing fine, living it up in a third world country!  Btw, I lived in Saudi Arabia for 7 years and the experience was life changing!

 

I would love to hear back from you if you are still around!

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