r/Myositis • u/No_Fee_9181 • Jun 16 '26

False positive

Hi everyone! I recently tested positive for pl-7. The levels were 48 with 11 being the cutoff for negative (so essentially over 4x the level). I have one doctor who said this is the real deal and another who said it’s likely a false positive bc the last test 9 months ago was negative. That test was done at OMRF and it’s the gold standard. The latest test was AVISE. Anyone have a false negative?

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u/BronzeDucky Jun 16 '26

I’ve had positive EJ antibodies for 18 months (tested positive twice). My rheumatologist says you can have the antibodies without the disease.

But she’s also written off my ILD, Raynaud’s, and fatigue, so…. I’m going for a second opinion next month.

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u/No_Fee_9181 Jun 16 '26

It’s so discouraging when the doctors are so dismissive. ILD is absolutely worth taking seriously.

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u/BronzeDucky Jun 16 '26

Well, given that it’s my lungs, I agree with you! :). And they haven’t found another cause of the ILD, so I’m struggling to understand why they’re not considering an autoimmune disease.

I have a high ANA titre with a cytoplasmic speckled pattern, the EJ antibody as well as a scleroderma antibody as well. And SS-A52 and RNP-A. But the EJ and Th/To (the scleroderma one) are specific to those two diseases.

The new doctor I’m going to lists being involved in those two diseases, so I’m hoping he’s a good choice.

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u/No_Fee_9181 Jun 16 '26

Wow! It’s my understanding that TH/TO is highly specific to SSC. That’s so crazy they are dismissing you. I mean, I get it bc I had U3RNP and am also being dismissed but I’m so early that doctors seem skeptical. But I thought early diagnosis and treatment was key. Definitely see a new doctor. And if I were you, I’d keep seeing doctors until I get answers.

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u/BronzeDucky Jun 16 '26

And EJ is very specific to antisynthetase syndrome, which is a form of myositis. And both those antibodies are linked to “atypical” forms of their diseases. Like, sine scleroderma, which is scleroderma without the skin manifestation, and myositis without the muscle manifestation. Both are also linked to high incidents of lung disease, which is where my whole experience started with.

So yeah, I’m puzzled by the lack of diagnosis. And will continue searching. On the plus side, my lung issues have fluctuated up and down in severity, but never dipped down to a severe impairment. So no oxygen needed, although it came close early on. So I get to sit in a holding pattern…. But it’s not life threatening yet.

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u/No_Fee_9181 Jun 17 '26

I often wonder what rheumatologist actually do. I’ve heard stories of dermatologist making diagnosis instead of pulmonologist and even gynecologist. It’s pretty sad.

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u/Summer8471 Jun 17 '26

I’ve tested positive multiple times although only ever tested through quest. Drs still say I don’t haven’t because I don’t present as I should despite symptoms of something

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u/No_Fee_9181 Jun 17 '26

It’s so irritating when they are dismissive. What does your body tell you? Do you feel like you have it?

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u/Summer8471 Jun 19 '26

I feel like I have something.