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M. L.'s avatar

Thank you again for this. I have my lists ready for when I next see my docs. :)

Hopefully they will be amenable.

I wonder what your thoughts are about Omega 3 index testing - one of the more specialized tests perhaps. I’m looking into that now. Apologies if (testing for this) this was covered elsewhere.

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M. L.'s avatar

Just my personal experience and thoughts .... if appropriate ....

I have no symptoms. But due to my family history, my PCP recommended I see a neurologist in her medical group for family history of dementia, That was the reason stated on the referral - family history. (She also wanted me to have genetic testing due to family history of cancer - all in an effort to be as proactive in my health as possible).

I went to see the neurologist with three objectives:

1) to go over my mother's Harvard Medical School brain autopsy report (we donated it to Alzheimer's research there years ago and they recommend you review the report with an appropriate medical professional);

2) to go over my family history of dementia, and their unique health histories and lifestyles vs. my own (very different from my own);

3) to get an APOE gene test.

I was unsuccessful on all counts.

The neurologist had nothing to say at all to numbers 1 and 2 (zero - no comment whatsoever) and as far as 3, she recommended I go to a research facility as they don't do that there (even though I was told on the phone when making the appt that they do) as this neurology department, she said, does not see the futility of it (I eventually did find out my APOE status - good news, at least, on that front).

OK, so no gene test. But I was amazed that she couldn't help me with my first two objectives at all - not even the autopsy report (written by neurologists). She could not help me interpret it.

I did do a little research on this doc before seeing her, but I couldn't find anything. Perhaps she is new. In any case, I trusted my PCP and her referral. I know my PCP meant well, and perhaps this neurologist is a good doctor - she was just was not the right one for this type of referral.

I share this as a cautionary tale.

I would suggested not only being clear in your objectives, but perhaps do a little more research in whom might be the best person for you to see, whether those concerns are for yourself at this time or simply stemming from a family history. Or possibly consider consulting a university or research center studying dementia for guidance, if at all possible. Certainly not all primary care docs, never mind neurologists, are as up on the subject as we might hope. Prevention, as we know (sadly) is a very controversial space.

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