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Access to tests?

Posted: Mon May 20, 2024 5:00 am
by Fiver
Hi everyone. I’ve been following the threads about testing. Thank you all.

But I’ve had trouble finding or accessing most sites for testing, especially blood testing for tau markers. The sites are so complicated, with dead ends or never ending loops….and in the end I’ve had to conclude the tests actually aren’t available direct to consumers. I feel like navigating those websites is itself a cognitive exam that I’ve failed. 😬

I’m following the links in previous threads and those in the wiki for self testing, mostly. Then I googled Preclicity ad2, a recently mentioned test, and there is virtually nothing online - that never happens these days. I know it’s out there, somewhere.

Am I doing something wrong?

Re: Access to tests?

Posted: Mon May 20, 2024 7:47 am
by NF52
Fiver wrote: Mon May 20, 2024 5:00 am Hi everyone. I’ve been following the threads about testing. Thank you all.

But I’ve had trouble finding or accessing most sites for testing, especially blood testing for tau markers. The sites are so complicated, with dead ends or never ending loops….and in the end I’ve had to conclude the tests actually aren’t available direct to consumers. I feel like navigating those websites is itself a cognitive exam that I’ve failed. 😬

I’m following the links in previous threads and those in the wiki for self testing, mostly. Then I googled Preclicity ad2, a recently mentioned test, and there is virtually nothing online - that never happens these days. I know it’s out there, somewhere.

Am I doing something wrong?
Hi Fiver,

You're not doing anything wrong, at least not re testing! Here's the link for PrecivityAD2, which is currently only available through a doctor's order, and not at all in NY state--at least not yet.

The Quest AD blood test is no longer directly marketed to patients, after they got a lot of coverage of its' poor sensitivity and specificity. https://www.medpagetoday.com/neurology/ ... ase/109142

Apollo Health will be offering a p-tau, GFAP and NfL test sometime next month, which it sounds like you've followed on the forum.

Re: Access to tests?

Posted: Mon May 20, 2024 9:48 am
by Fiver
Oh thank you Nancy!

When people ask me for advice I’ve been telling them that, if they can afford it, they should get in with a good E4 aware doctor. That the expense is the price of access to tests and prescriptions. After a couple of doctors who made me run the other way I had found a good one for a while, but they moved on. I should take my own advice and find another. Doing it on my own has limits.

Re: Access to tests?

Posted: Mon Jun 10, 2024 10:05 am
by Fiver
Hi everyone,

Several people PMed me to tell me about options for getting the most recently available tau blood test. Thanks for that!

Just a quick update. I had a conversation with my primary care doctor and asked about the test. I explained why. And she was happy to order it. She also has a family history.

It took some time and effort since no one had ever had the test - the codes were not in their system and it had to be programmed. That took two weeks and they charged a visit fee, which is ok I guess. I did the research - will help from friends here! - and get the Quest codes for them. I had the blood draw at Quest today. And they remarked that no one had ever had this test there before either.

They asked if I had any biotin within 72h, which I had not. Except for, you know, from food.

I’ll come back and summarize the experience and the cost when I know. I assume my insurance won’t pay for it and I’m not sure exactly what the total cost will be in the end.

I decided to go this route because I wanted to try to open up a pathway for others in my town. But we’ll see how this works.

Thanks everyone for the help. This feels like a victory, actually, to have access to a reliable blood test, and hopefully information I can use to adjust my plan.

Re: Access to tests?

Posted: Thu Jun 13, 2024 10:11 am
by squirrel320
It is very difficult and takes persistence! I recently attending the Apollo Health live webinar on new tests coming soon. During that webinar, for any Canadian here, BC Neuroimmunology was recommended for state of art testing for Tau (181 and 217) and Nfl.

https://bcneuro.ca/tests/

I am very fortunate to have an awesome primary care doc and after some homework, his office found a way to get a sample off to BC Neuro - it requires a blood draw, which then needs to be frozen and shipped, ensuring that it arrives meeting their strict criteria. It does take them time to process - they thought initially 2 weeks turnaround after running the assay, but are now quoting five weeks total. So alas, I am still waiting. I am not sure, perhaps they got bombarded with requests after the webinar!

BC Neuroimmunology is working on an arrangement with our main labs to arrange a more direct route for samples and shipping.

Hope that helps some based in Canada,