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motherbeth

Scleroderma, can the blood tests be wrong?

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Hi my name is Beth and I had a question if any one could help me it would be great. I had a positive ANA test come back and they then ran more tests and the SCL-70 ad came back positive. I just found out today about that.

 

The thing is do not show any skin problems. They reason they tested is because my periods were not coming anymore and I have also had a few miscarriages. I am only 27 so I never thought that they would find anything bad. It is possible that the blood work is wrong? I really am not sure what to think right now it is a shock to me to be honest. My blood work came back as 105 and I was told that the normal range was 0 to 40. Does any one know if that is the normal range? I don't have the symptoms of skin problems at all. I do have joint pain sometimes but nothing major. I have always had pain on my right side that never can be explained. I have noticed lately that I get fatigued more than usual. I guess right now I am hoping the test is wrong. Sorry for rambling on I just am not sure what to do.

 

Beth

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Hi Beth,

 

Welcome to Sclero Forums! I'm very sorry that it is because you have concerns about scleroderma, but you have come to the right place for some input to help you sort it all out.

 

Please keep in mind that I'm not a doctor, I have no medical training at all, and verify everything I say with a reliable medical source. As I understand it, it is possible to have positive bloodwork like this, yet still not have scleroderma. That is why scleroderma is diagnosed based only on clinical symptoms, and not by blood tests alone.

 

I would imagine that the next step for you will be referral to a rheumatologist, or are you already seeing one?

 

In short, for comfort in the meantime, it IS possible for the test to be wrong or even for it to indicate other things. We have a few members of the forum who keep on checking back in every so often, as they have positive blood work but no symptoms yet, or no symptoms that would be specific to scleroderma. Still, though, you need to follow-up with any recommended testing or screening, to be on the safe side.


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 Beth,

 

Shelley is right, the blood tests don't give you a positive diagnosis of scleroderma. It's a shock, though, to get positive tests results and think you might have a problem. I'm really sorry you have this worry and sorry about your miscarriages. I wish you all the best and hope you'll post often.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I too continue to have positive SCL 70s. The most recent was 248 in a range of <100. I just saw my rheumatologist and she felt my skin and said "no". I've been trying to understand symptoms that do not include skin. I understand and share your concerns.

 

Betty

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Hello Beth

 

Welcome to the forum and sorry for the late welcome! Bloodtests aren't the be all and end all for diagnostic purposes as already said. It can work the other way as well, I have diffuse scleroderma with skin, heart and gastrointestinal involvement but my bloodwork says NO!

 

Take care.


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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Hi Beth

 

Sorry to hear you are so scared...we've all been there...rest assured. I was also told that bloodwork alone cannot make a diagnosis. I understand that you would need bloodwork plus at least 2 physical symptoms for any diagnosis of scleroderma. I was also told by my doctor that some tests can be false positives. I agree with the others in that is it very important for you to have a rheumatologist (one that specializes in Scleroderma would be best since it is a rare disease)...then he/she can either rule it out or test more to find out what if anything might be going on with you. These things can sometimes take eons to figure out...they are like giant puzzles unfortunately...so don't count on quick answers, chances are better than good that won't happen over night although we all want it to, especially in the beginning because we are always so frightened of the unknown. The ISN Team will give you a list of specialists in your area if you let them know what general area you are in (don't need to be specific) if you need to find one.

 

If I may, I strongly suggest that you don't read everything on the internet....not good or useful, many of us have done that, been there, not going back....this is the place to be to ask your questions and actually get factual answers.

 

Oh, and be sure to ramble away, don't ever worry about that...there is always someone here that is in the know and helpful!


Sending good wishes your way!

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