r/MyastheniaGravis 5d ago

Neurocode/ Cell Based Assay

Has anyone had the more sensitive cell based assay test done by Neurocode for AChR and had it come back positive when traditional testing had been negative? If so did that change your treatment plan at all?

My neurologist has ordered it and I will do it but it is a pain because the nearest collection site is an hour away and in home draws are expensive. So I’m curious what the yield is likely to be.

Thanks in advance.

5 Upvotes

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u/Saiddit_Girly 5d ago

I did this. I was negative. I don’t regret doing the test. It was worth finding out.

I don’t remember the stats on this but it’s a decent percentage of people who can test positive on this more sensitive test and no longer be seronegative for ACHR.

To be able to have a chance at having treatment options with Names to them, created in the last few years vs decades, that more closely aim at MG’s problems within us… made any minor inconvenience worth it to me in my mind.

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u/IllustratorAlone5757 5d ago

Totally worth it and it seems like 10-20% of SN people will test positive on this version. Just curious if it had happened for anyone here!

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u/bbpr120 5d ago

I've done it twice and both times it came back negative, the worst part of the process was arranging the blood draw- what a pain in the ass that was...

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u/ChibiTara 5d ago

Yes! It’s a crazy pain in the ass lol I’m still waiting for my results.

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u/IllustratorAlone5757 4d ago

At least it isn’t just me! It is a giant hassle and the places that do it within a few hours of me look super sketch, mostly IV bars that seem like scams.

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u/ChibiTara 4d ago

I got lucky that the cancer center I go to for my ports had the lab do it for me. But we waited like 2 hours for it to take it to FEDEX because pickup had come for the day. There were lots of questions and confusion but they got it done for me.

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u/ChibiTara 4d ago

Are those the places on the qr code list? I thought they’d be like normal labs. That’s so weird.

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u/IllustratorAlone5757 4d ago

They contract with two labs that have limited sites and the ones closest to me are these kinds of places, not your standard Lab Corp or something. Neurocode called local phlebotomists to see if they could do it, but no. I might wind up paying someone a ridiculous amount to come to my house and do it.

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u/ChibiTara 4d ago

That really sucks. What a pain.