New Member Intro - former biotech exec 4/4, updates from 1st neurologist meeting 7/10/24

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
June
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Re: New Member Intro - former biotech exec 4/4, Qs for neurologist 1st meeting tomorrow

Post by June »

Hello friends,

I'm getting ready for my first neurologist referral appointment tomorrow morning, and my son (4/3) will accompany me. I've done extensive lab tests (nothing remarkable) using lists on the Primer as a guide. MOCA test is within normal range too. I did notice short memory not as good as before.

Are there questions you think are helpful/insightful to you that you asked during your own neurology appointments that you'd like to share here?

If you were in "pre-clinical" stage (no clinical symptoms of MCI or AD) but wanted to establish some baseline when you first met your neurologist, what specific AD biomarker tests did you ask or were recommended to take? (P-tau 217? others?) Were they helpful to you? What additional cognitive test(s) besides MOCA did you do?


I plan to discuss his thoughts on AD prevention involving diet/supplements (especially homotaurine), lifestyle, and other interventions (Rapamycin, gamma wave, hormone replacement therapy for women, etc.), ways to detect MCI and early AD using biomarkers, promising clinical trials like ALZ-801 (he has been involved in some) and trends. I'll share the new UCSD Virtual Reality Brain Health trial I just enrolled in.

Normally neurologist appointments takes many month to secure, for example, 9 months for UCSD neurologists, 4-5 months for a USC neurologist. So I couldn't believe I was able to get this prominent neurologist (Johns Hopkins MD, former UCSD neurologist, current Chief Medical Officer of a neurology clinic) referral in less than 2 months! I have to thank my therapist (clinical psychologist) who brought up this boutique clinic to look into.

Thanks in advance for sharing thoughts!
June 4/4 yet hopeful
Former biotech executive
June
Contributor
Contributor
Posts: 34
Joined: Sun Jun 09, 2024 9:13 pm
Location: Southern CA

Re: New Member Intro - former biotech exec 4/4, Qs for 1st neurologist meeting 7/10/24

Post by June »

Hi all,

I had a good first visit to my neurologist yesterday, accompanied by my son. It was 45 min but went by so fast that I didn't get to ask all my questions ; ). Some interesting things I learned from the neurologist that might interest you:

- He would like to have me finish an extensive "neuropsychological test" conducted by a neuropsychologist who will write a detailed report in 4-6 weeks after the test. Mine is scheduled for 7/19/24, a 6-hr appointment with 30 min lunch break. The neurologist said this will help him assess my cognitive baseline accurately, which will inform his thoughts about any intervention if needed.

- He ordered a blood test to confirm my E4/4 genotype from 23andme

- He said the industry is moving towards biomarker blood test for early detection very soon. I asked if he is referring to the P-tau 217 blood test by Precivity, he said YES and that's a good test. Also he thought the Labcorp's P-tau test is not very good. I asked if he could order the P-tau 217 blood test by Precivity for me, he said he prefers to do that AFTER getting my neuropsychological test results so that he can formulate an action plan and better interpret my P-tau 217 result.

- He said that he considered the Alzheon's ALZ-801 to be the most promising near-term treatment for ApoE4/4 and possible prevention later on if their phase 3 trial results meet their goal (this is what a lot of us here think too). He knows their trials well and said he will likely be involved in future studies (I assume the extended phase 3 and possibly ApoE4/4 prevention trials). This is fantastic! I'll definitely ask him more questions about ALZ-801 in my follow-up visit in September.

- He agreed with much of the critique of the Fortea Nature Medicine 5/6/24 publication about ApoE4 homozygosity as a new genetic form of AD, and gave me a printout of the editorial commentary from the same publication. No need to panic, a lot of positive development in the field.

My question for you: For those who have done an extensive "neuropsychological test" (3-6 hrs), could you share your experience what it was like and what you learned from doing it?

Thank you and stay tuned for updates...
June 4/4 yet hopeful
Former biotech executive
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