Wanting to connect with anyone testing Positive/Abnormal for JCV

Posted by delia74 @delia74, Feb 21 1:57am

Anyone with experiences related to JCV and having results such as what my bloodwork revealed?

My neurologist ordered a slew of blood work (suspecting MS based on MRIs done at another medical group), and I'm feeling anxious about a couple of the results -- that's why I'm sitting in front of my computer at 2:20 AM!

This is what I saw late yesterday afternoon on the Patient Portal:
JC virus AB, EIA: Positive/Abnormal....
JCV Ab (Index) w/Rfx to Inhibition Assay
Index Value 1.00 HIGH

Knowing nothing and fearing everything, I set about googling for info from reputable sites. It became clear WHY he had included testing those factors, because if indeed my results indicate that my brain demyelination is due to the virus, then he needs to carefully choose the medication. The wrong med can definitely make things worse for me, and I certainly don't want that...

My prior neurologist (to whom I'd been referred in 2014 for suspicion of MS by ophtha-neurologist) had sent me to several specialists in NYC, ordered tons of tests to rule out Graves and other disease, and still had no definitive diagnosis by 2017 or so. Told me there was "...nothing more I can do for you.." But yearly MRIs were done to keep track of lesion progression. Strangely, they stopped! But the MRIs were done up to 2022, at which time activity was detected...I decided to consult with neurologist in a different medical group (same doctor who diagnosed CRPS of my left ankle), and brought along ALL of my MRIs...After viewing them, he came back into the room looking as if he was trying to control himself, which confirmed to me that there was more in the discs than what I had been apprised. Yes, he said that there had been progression, and he asked many questions about my ataxia, gait, memory, etc. He made it clear that he would address what needed to be done in order to obtain answers. Besides ordering MRI of the brain, cervical and thoracic spines (all three to be done this coming Friday and Monday), he ordered multiple blood tests. (A lumbar MRI had been done within the last year by pain management doctor.) I left that day both anxious and relieved. Anxious about what would be revealed. Relieved that this highly regarded neurologist would help me with answers and a course of treatment...but I was unprepared for the results that I saw about JCV.

Via researching, I have learned that of course he included testing for that virus because it could well determine which medication(s) he would prescribe for me. But I still am a bit confused about the wording of test results. Frankly, they are intimidating.

So if anyone can shed light or has experienced similar test results, I would so appreciate hearing from you.
I do have quite a few other medical issues on my plate, so I am trying to not put the cart before the horse. I just want info, words of wisdom perhaps?
Thanks for reading this, and I hope to get responses. I did check through this site and found very little on the topic.

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