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Positive blood tests, need answers

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#1 Shelley Ensz

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Posted 06 August 2011 - 06:57 PM

(This message was reposted by Shelley following a forums database issue today.)

I'm new to all this.. I just got back Scl-70 with a rating of 201, SSA or 191 and SSB of 171. (It drives me crazy that there are different scales as it makes researching this harder.) But anyhow the test sheet says they're all positive. I can't see the rheumatologist for another couple of weeks. I have had symptoms that I thought perhaps pertained to TMJ -- pain in the jaw face and neck. And the other symptom is the pain and fatigue flares in the evening but is generally fine in the morning until about 5pm.

I can still go biking for hours in the hills or go swimming and I feel better during and after. I'm still able to have happy times with the family. The internet literature on the Scl 70 is scary. But it's been mixed. Some says it's a quick slide into death for most people without skin symptoms. And then other lit says that now that they know that lungs and heart are likely to be affected they do a full court press to prevent things from getting out of hand there. They also talk about immune system reboot for $150k. (Stem cells, radiation oh boy.) I can't put in the extra hours at work that I used to and it's scary to think slacking there could have me out of work and without insurance while having this sword over my head.


#2 Shelley Ensz

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Posted 06 August 2011 - 06:59 PM

Hi Zerenity,

Welcome to Sclero Forums.

It has to be very worrisome to get your test results back, without any explanation from the doctor to go along with them. I hope you also discovered in your internet meanderings that 20% of all lab tests are wrong, and that scleroderma is diagnosed based only on clinical symptoms and not by blood work. That's because some people with positive blood work never develop scleroderma or other major disease. We have members who have had positive SCL-70 for over ten years and still have not developed scleroderma.

Likely, your doctor is going to explain that there's no reason to panic over blood tests alone. They'll probably repeat the test at some point to see if its a "real" positive or a lab error. And they might begin some basic screening to get a baseline of your internal organs, just in case. I'm not saying SCL-70 is all good, nor is it all bad; it is just far less important than your actual symptoms. Happily, very very few of us ever need to pursue stem cell transplants.

I understand your panic, though, especially at all this being new and scary. I just want to welcome you, assure you that it's generally not as bad as it seems at first, and give you a warm welcoming hug to help see you through this very tumultuous time.
Warm Hugs,

Shelley Ensz
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#3 Joelf


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Posted 06 August 2011 - 11:49 PM

Hi Zerenitynow,

Welcome to these forums!

I'm sorry to read that you've had worrying test results and also symptoms of pain and fatigue.

As Shelley has said, many of our members have had positive blood tests but have never gone on to develop full blown Scleroderma. I've included a link to Auto antibodies which I hope you'll find interesting and informative. I have tested positive with the Anti-PM/Scl antibody but so far have not developed Polymyositis and like you am very active and I have a good quality of life despite having Limited Systemic Scleroderma.

Please don't feel too overwhelmed; now you've found our forums and joined our community you're assured of plenty of understanding help and support. Please do keep posting and here's a welcoming :emoticons-group-hug: to keep company with the one Shelley has given you. :)

Jo Frowde
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#4 Amanda Thorpe

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Posted 08 August 2011 - 02:46 PM

Hello Zerenity

Welcome to the forums and let me just put the boot in with regards to blood work, I have diffuse scleroderma with ulcers, skin, joint, gastrointestinal and heart involvement but my blood work is negative ANA, negative SCL-70 and normal rheumatoid factor. So you see if you diagnosed me on blood work alone you would say there was nothing wrong with me!

Take care and keep posting.
Amanda Thorpe
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