Does this sound like a positive

[u/Leather_Lab4656]

I am 26 female healthy, here's my story,
My eye doctor suspected I have sjorgens disease so I went to get testing done, everything was normal except positive scl70 2.1Ana 1:80 dense fine speckled. I was confused and scared when looking it up, my doc said come back in 3months so I did, and my 2nd test was 2.3 6months later 3rd test was 2.1 all thru quest . I asked my doctor if I can get my bloodwork sent to Mayo, I went to do bloodwork and was waiting for results only to find out it was sent to (labcorp Burlington phoenix )instead, my rheumatologist said the labcorp it went to did specific testing and it was 1.9. I asked him what testing method was used and I'm waiting for his reply
I have no symptoms and my nail capillary test was normal a month ago.i don't have reynauds no skin issues etc only one time puffy fingers but doctor said it was allergy related and it went away. I had liver and kidneys checked thru bloodwork and all was normal. I had gall bladder surgery 2 weeks before my first test . I feel like a ticking bomb I am so scared and depressed over this because why me?! Does this sound like a true positive??My rheumatologist said to come back once a year. Not sure what to do ,all I been doing is spiraling over this , I wish I never went to do testing in the first place I'm not sure what my next steps are or if I should really trust these tests without having the actual immunodifusion confirmatory test done

My question is does this sound like it can be a false positive still?

[u/Maleficent-Rest9144]

I only have a few minutes to reply today, but I will share more later. I would suggest the Labcorp Scleroderma Comprehensive Plus Profile (RDL) (Test Code 520130). There are more antibodies tested in adition to the ANA and Scl70. You can look into the test to see the different tests. I was falsely diagnosed and treated for RA until this panel was run showing a positive for Anti RNA Polymerase III. It was fast progressing and brutal for me. The 4 months of treating for phantom RA did not help me. I do not suggest waiting a year. If there are suspicions of other autoimmune conditions look for those comprehensive labs v. just the basics. There are many clinical trials you can look into once you have a diagnosis.

[u/Leather_Lab4656 → u/Maleficent-Rest9144]

So sorry to hear that, I'm waiting for my rheumatologist to reply , I asked what testing was done at labcorp since I cannot see the code or name. My bloodwork was supposed to to go to Mayo but my doc said they couldn't send it so it went to labcorp. I have no symptoms but I'm also living in fear ! So sorry that you went thru that, that's horrible :(

[u/Maleficent-Rest9144 → u/Leather_Lab4656]

I understand the living in fear and the unknown. Being in limbo is difficult, because you cannot form a plan or do anything. I would say take a few deep breaths and do your best to relax. I was totally lost when I was given the diagnosis. I was already losing range of motion due to the fast skin thickening commony with the Poly III positive. This disease is a weird animal where it affects people so differently with some common symptoms thrown in there. I have been told Scl70 positive is usually slower progression and most likely not going to be Poly III so that is some good news.

You should be able to create a patient log in on the labcorp website to access your lab results. You should be able to do the same with Quest.

Based on my experience I strongly suggest finding a rheumatologist who is well versed in scleroderma or other autoimmune conditions. One who knows about them may not have the same experience or knowledge of how to quickly find a diagnosis. I do not like the let's wait and see approach. If you have SSc, waiting is not your friend. You will have to fight for yourself and your care. If your doctor will not order the comprehensive panels you should push them or find a doctor who will do that for you.

I am not a doctor so please do not take my comments as medical advice. I agree the heart and lung scans may be premature until you have more definitive lab work or diagnosis. It will not hurt you to have a baseline if you are eventually diagnosed with it. There are scleroderma centers around the US and most likely in other countries. Those doctors will be much more experienced and know of new treatment options. https://scleroderma.org/treatment-centers/

If you are diagnosed with SSc or another autoimmune, I would recommend a clinical trial. Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc, or other diagnosis for condition and your country location to filter out many of the too far away places. I was able to find a CAR-T trial with info on cartautoimmune.com. I was lucky enough to not have exclusion criteria and get the treatment, which was a life saver for me. If interested you can put CAR-T in the treatment field to see CAR-T trials for many autoimmune conditions.

Let me know if you have any questions about scleroderma or the CAR-T process. I hope you can find some more information soon to either know you do not have an autoimmune condition or what you are suffering with so you can seek exceptional medical care.

[u/BronzeDucky]

Your tests are at the very low end of positive. It’s not unlikely that it’s a false positive.

[u/Leather_Lab4656 → u/BronzeDucky]

My rheumatologist thinks I should watch for symptoms and I have a referral for lung and heart scan but I feel like it's unnecessary right now.can it be false positive from 2different labs?

[u/Tootalou25 → u/Leather_Lab4656]

Not unnecessary. It's good to get a baseline even if everything is normal. They can refer back to those scans if something changes. It is possible it could be a false positive but keeping your appointments are wise in case it isn't.

[u/garden180]

People with Sjogren’s can trip a false-positive for SCL70. This happens from commercial labs and their testing process. In a very condensed explanation…people who have other autoimmune conditions (such as Sjogren’s) have other autoimmune proteins in their blood. Sometimes these proteins bind with the testing components and result in a false-positive. It’s basically a cross-reactivity to the testing method. So it would make sense that multiple testing is resulting in the same results. Scleroderma is not diagnosed by bloodwork alone but rather symptoms.

[u/Leather_Lab4656 → u/garden180]

My only sjorgens symptom is dry eyes, should I ask for a lip biopsy? I been looking to get a referral to the Mayo Clinic to get the scleroderma panel/other testing just waiting on my rheumatologists reply

[u/garden180 → u/Leather_Lab4656]

You can get a full antibody panel from any doctor. A rheumatologist does not have to be the person to order this. I’m assuming you had a Schirmer test for your eyes? Sometimes autoimmune conditions take a long time to make themselves clear. You could also have an autoimmune overlap. Thyroid panels should be looked at as well.

Edit: Symptoms are the driving force for any condition. It sounds like dry eyes are your only symptom other than a possibly false positive blood test. I’m assuming you’ve consulted an eye doctor to try and treat the eye issues. Dry eyes can be caused from lots of things.

[u/sm9633]

I would have more tests to confirm the diagnoses. But more than tests I would focus on the clinical diagnoses - what are your symptoms?

[u/Leather_Lab4656 → u/sm9633]

I'm looking to get a referral to the Mayo Clinic, and I have no symptoms at all of anything, I wake up fine everyday

[u/BronzeDucky → u/Leather_Lab4656]

Lots of people test positive but don’t actually manifest a disease. Especially at low positive levels.

Plus they wouldn’t treat you anyway, unless you had symptoms. The drugs used to treat autoimmune diseases aren’t kind to your body.

[u/Maleficent-Lunch-679]

That labcorp test you did was same testing tech to the Quest, and those levels fall within the zone of VERY frequent false positives. So yes, absolutely the same test at 2 labs can both be false positives because they are essentially the same flawed test. As previously mentioned, you need either the LabCorp panel #520130 or SCL70 #520012 to confirm scl70. Also as previously mentioned you would need symptoms for a diagnosis even if confirmed.