Nov 10, 2023·edited Nov 10, 2023Liked by Annie Fenn, MD
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.
Hi ML. Yes you can get an omega 3 index test through your doctor or ordering an OmegaQuant kit. The latter is probably less expensive and comes from a reliable company.
Oct 9, 2023·edited Oct 9, 2023Liked by Annie Fenn, MD
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.
Hi M.L. Thanks for sharing this. While it is not my intention to throw my fellow colleagues under the bus, it is a fact that many primary care doctors and even neurologists are not experienced in discussing these topics. Most neurologists are extremely busy treating disease but have less experience preventing it. Also, preventive neurology is in its infancy. There is no board fellowship that addresses this. I know of one fellowship-trained neurologist focused on prevention and she created the program herself (Dr. Kellyann Niotis--follow her on Instagram.) I agree that seeking a consultation with a neurologist affiliated with a university or teaching hospital is your best bet. Also, being very clear about your objectives before you book an appointment, even asking upfront if they will be able to give you a referral for a genetic counselor, which may be a reasonable next step for you do discuss ApoE4 testing. This is another reason why direct to consumer genetic tests have become so popular but they often lack support and follow-up in the case of a positive result. (Let me know if you want to go this route and I can recommend a company.)
My question is: when I read x or y helps prevent or slows down Alzheimers can I substitute vascular dementia or just dementia and the info will still apply?
My maternal side of the family has a history of vascular dementia.
Hi Rachel. Great question! There is a lot of overlap with Alzheimer's and vascular dementia; at least have of all Alzheimer's victims will have vascular dementia too. Some people with vascular will also have facets of Alzheimer's, but not always. The modifiable risk factors that I linked to from the Lancet Commission pertain to all demenitias, which are primarily Alz, vascular, or a combination. Reducing cardiovascular risk factors, as you know, is really important with your family history, and can also reduce Alzheimer's risk. Does that help?
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.
Hi ML. Yes you can get an omega 3 index test through your doctor or ordering an OmegaQuant kit. The latter is probably less expensive and comes from a reliable company.
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.
Hi M.L. Thanks for sharing this. While it is not my intention to throw my fellow colleagues under the bus, it is a fact that many primary care doctors and even neurologists are not experienced in discussing these topics. Most neurologists are extremely busy treating disease but have less experience preventing it. Also, preventive neurology is in its infancy. There is no board fellowship that addresses this. I know of one fellowship-trained neurologist focused on prevention and she created the program herself (Dr. Kellyann Niotis--follow her on Instagram.) I agree that seeking a consultation with a neurologist affiliated with a university or teaching hospital is your best bet. Also, being very clear about your objectives before you book an appointment, even asking upfront if they will be able to give you a referral for a genetic counselor, which may be a reasonable next step for you do discuss ApoE4 testing. This is another reason why direct to consumer genetic tests have become so popular but they often lack support and follow-up in the case of a positive result. (Let me know if you want to go this route and I can recommend a company.)
I love how you present in a clear manner.
My question is: when I read x or y helps prevent or slows down Alzheimers can I substitute vascular dementia or just dementia and the info will still apply?
My maternal side of the family has a history of vascular dementia.
Thanks! Rachel
Hi Rachel. Great question! There is a lot of overlap with Alzheimer's and vascular dementia; at least have of all Alzheimer's victims will have vascular dementia too. Some people with vascular will also have facets of Alzheimer's, but not always. The modifiable risk factors that I linked to from the Lancet Commission pertain to all demenitias, which are primarily Alz, vascular, or a combination. Reducing cardiovascular risk factors, as you know, is really important with your family history, and can also reduce Alzheimer's risk. Does that help?