Help with mixed testing results and next steps

Posted by catadmirer @catadmirer, Jul 3 6:06pm

Hello everyone,

I am on a diagnostic journey for an unknown disease that has AI-like symptoms. Briefly, they include: chronic fatigue, joint stiffness and paint in hands, wrists, elbows, and shoulders that is worst in the morning, Raynaud's, difficulty with balance, sun sensitivity (in symptom severity but not rashes), visual disturbances (sparks and floating disks), essential tremor, difficulty speaking when fatigued, and so on. I'm assigned male at birth, just fyi.

I was given a lab order for an ENA panel about 4 months ago and was positive for dsDNA (40 on a multiplex with a reference range of 1:9). I was then referred to a Rheumatologist who asked for an ANA (which I learned would be the proper order of testing, ANA into ENA). However, the ANA was negative, so my referral was denied.

I didn't feel very satisfied with that result because I thought the dsDNA was relatively high titer. I went through further testing that was inconclusive and decided to redo my ANA and dsDNA (at the same time) through Quest a couple of days ago. The ANA was negative, but the dsDNA remained positive with a 38 on the same scale (1:9 ref range).

I just don't understand. Is it possible or likely to get repeated false positives on dsDNA ~9 weeks apart? Is there some other test I should ask for? I am considering trying to find a solid-phase ANA and a Farr or Crithidia dsDNA ab test, although I'm not quite sure how I would specify them... I don't have a high ESR, and I haven't been tested for C complements or whatever other inflammation blood tests there are. I rarely get fevers. But, I do feel like my symptoms might align with SLE or some other AI disorder.

I have also noticed that my fingernail beds are dotted with blood spots and I used a small microscope to examine them after reading up on that as a sign. I find it hard to precisely analyze them, but it seems like I have many large and strangely shaped capillaries in my fingers, which I believe can be a sign of AI disorders, but I'm not sure how useful or persuasive that would be to my doctors (especially since I can't see a rheumatologist...).

I've read up a lot on testing.com and various other websites (even watching a lot of medical student videos on diagnosing AI), but I don't have a good grasp on what my results mean or what I should advocate for.

If you were in my shoes, what would your next steps be?
What exactly is a "high" dsDNA titer? Does that make a false positive less likely?

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