New member BC, Canada

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Jenpet
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New member BC, Canada

Post by Jenpet »

Hi everyone,

I found this site via my results from Promethease. My 23andMe results say I have one copy of the APOE4 and my results from Tellmegen state I am at high risk of AD (when I imported the raw data from Tellmegen into Promethease it does show I have both 3 and 4). I read that 23andMe only reports if you have one copy of APOE due to the FDA rules apparently. Here’s my story:

I am a 50 years old with minor cognitive impairment (I went through neuropsychological testing a couple of years ago with a neuropsychologist at the University of British Columbia). I had been having a lot cognitive issues, internal and external tremors, fasciculations (muscle twitching hands and around my eyes mostly, legs/feet), fatigue, pain and other symptoms. I have a family history of autoimmune diseases and thought I might have a neurological disorder/disease like multiple sclerosis or Parkinson’s - so I have seen numerous neurologists over the last few years. I have an abnormal brain MRI with small white matter hyper-intensities/lesions in my frontal lobe - not typical of someone my age or with my health history. Neurologists seem to dismiss my abnormal MRI being that the lesions are not in the areas typical of multiple sclerosis. My neuropsychologist that did my cognitive testing told me that these lesions are definitely abnormal and not typical of someone my age and said they are in the the areas of my brain responsible for memory, executive function etc - and believes they could be partly the cause of my mild cognitive impairment. Neurologists believe I do not have MS or Parkinson’s. I briefly mentioned at my last appt with with neurologist that I may be predisposed to AD because of the APOE 3/4 and he said “people with AD do not ask if they might have AD”. So, needless to say I did not push the conversation. I wasn’t really asking if had AD - I just wanted to know if perhaps many of my symptoms could be attributed to early onset AD because he could have referred me to a neurologist that specializes in AD. He then told me he does not know what is causing my loss in function causing disability (with my cognitive issues and fatigue I can not longer work as a software engineer and am on LTD).

My working diagnosis is Myalgic Encephalomyelitis (chronic fatigue syndrome) and am currently on a waitlist to confirm dx. The neurologist I saw to rule out Parkinson’s Disease said I have “Parkinsonian” like symptoms, but based on a specialized scan and her exam, I do not have Parkinson’s and diagnosed me with Functional Neurologic Disorder (FND) - although I believe it is possible that I have this, I do not believe this is the cause of all of my neurological issues and believe there is some sort of underlying condition causing this. I also have high autoimmunity (due to family history and high autoantibodies, positive Rheumtoid Factor) - all of which are not high enough to diagnose me with an autoimmune disease per my last rheumatologist.

I am still taking in all the info about having APOE 3/4. It would make sense to me if I do have some sort of early onset AD - but I guess I am unsure what to do about it and if I should seek out a confirmed diagnosis now or just go about trying to manage it on my own with diet, etc. My main concerns right now are my cognitive issues and wanting to improve or at least keep it from getting worse. I am now also concerned with all of the possible cardiovascular issues APOE 3/4 poses as well. I had previously read Plant Paradox awhile back ago (currently re-reading now). I would like to lose weight and need to figure out the best diet (I am guessing that by cutting out dairy, grains, etc I would lose weight). I have a hard time exercising due to fatigue and have to really pace myself so that I do not overexert (if I do, it can send me into a flare up making all my symptoms worse and takes me about a week or so to recover).

I am extremely grateful in finding this group! Thanks for reading :D
50 yr old female EPOE 3/4 with MCI. North Vancouver, British Columbia Canada
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SandyZ
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Re: New member BC, Canada

Post by SandyZ »

Jenpet wrote: Fri Nov 11, 2022 5:29 pm Hi everyone,

I found this site via my results from Promethease. My 23andMe results say I have one copy of the APOE4 and my results from Tellmegen state I am at high risk of AD (when I imported the raw data from Tellmegen into Promethease it does show I have both 3 and 4). I read that 23andMe only reports if you have one copy of APOE due to the FDA rules apparently. Here’s my story:
.....

I am extremely grateful in finding this group! Thanks for reading :D
Welcome jenpet,

As a Welcome Team Intern, I would like to formally welcome you to the ApoE4.info website. I'm glad you found this knowledgeable and supportive community!

Thank you for sharing your story.

If you would like to deepen your understanding regarding ApoE4, the Primer is a detailed and informative resource written by a practicing Medical Doctor with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

The How to Guide offers tips on how to navigate forums, including how to quote members when you respond to posts so they get an email notification of your post (tip: use the quotation icon in the upper right of any post). The How to Guide also demonstrates how to use the Search function for topics and how to subscribe to topics of interest in the forums.

The good news is that there are many things we can do with sleep, diet, exercise and stress management, to name a few, that can improve cognition. You will find that the Wiki is another resource full of information that you might helpful.

Finally, if you would like to learn more about other community members' experiences, you can link to Our Stories. You are welcome to share your story in Our Stories as well, so that other members can respond to you. You will find many success stories from other members.

Keep in mind that you can make small changes so you aren't taking on too much at one time. It's better to make small changes that you can keep doing than to do a lot that is not sustainable. As you stated, exercise can trigger symptoms, so start out with something small and build up slowly.

I hope you find this community helpful and that you find the support you need. Let me know if you have further questions that I can help you with. I look forward to hearing from you in the future.

In gratitude,

SandyZ
SandyZ
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NF52
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Re: New member BC, Canada

Post by NF52 »

Jenpet wrote: Fri Nov 11, 2022 5:29 pm Hi everyone...

I am a 50 years old with minor cognitive impairment (I went through neuropsychological testing a couple of years ago with a neuropsychologist at the University of British Columbia). I had been having a lot cognitive issues, internal and external tremors, fasciculations (muscle twitching hands and around my eyes mostly, legs/feet), fatigue, pain and other symptoms. I have a family history of autoimmune diseases and thought I might have a neurological disorder/disease like multiple sclerosis or Parkinson’s... I have an abnormal brain MRI with small white matter hyper-intensities/lesions in my frontal lobe... I just wanted to know if perhaps many of my symptoms could be attributed to early onset AD because he could have referred me to a neurologist that specializes in AD. He then told me he does not know what is causing my loss in function causing disability (with my cognitive issues and fatigue I can not longer work as a software engineer and am on LTD).

My working diagnosis is Myalgic Encephalomyelitis (chronic fatigue syndrome) and am currently on a waitlist to confirm dx. The neurologist I saw to rule out Parkinson’s Disease ... based on a specialized scan and her exam,...diagnosed me with Functional Neurologic Disorder (FND)...
Hi Jenpet,

I am so sorry that your career as a software engineer has been curtailed and that you had to consult so many neurologists without any easy answers. It sounds like your doctors do care, and are able to rule some things out (MS, Parkinson's) without being able to give you a clear cause for what is happening. I didn't realize until very recently just how important the white matter of our brain is--sort of like using my laptop every day without realizing how important software engineers have been to every program I think of myself as having "learned."

The neurologist who told you that "no one with with AD asks if they have AD" may not diagnose too many people with Alzheimer's who have ApoE 3/4 or 4/4, biomarkers of amyloid and tau and subjective cognitive impairment or MCI . Many of them know early on that something is wrong and want a diagnosis! But your one copy of ApoE 4 is usually a risk for late-onset cognitive impairment (65+ age). Early-onset AD (in my non-medical opinion from knowing several people with this) typically presents without the motor symptoms you've had.

Below is an excerpt about recent research at Mass General Hospital that suggests the MRI might be hinting at a cause. Was the most recent "specialized scan" a PET scan, or possibly a Diffusion Tensor Imaging (DTI) scan? The latter is what was used in the research below, but is probably not used in general neurology practices.

It may be that knowing it's real, without a specific genetic, auto-immune or environmental cause, will be just as frustrating. But it may also allow you to get physiotherapy, cognitive behavioral therapy and counseling to help you figure out how to still be YOU--with some accommodations like your current planning for exercise.
Using a novel method of analyzing MRI scans, neurologists at Massachusetts General Hospital identified microstructural differences in white matter between 32 patients with functional neurological disorder (FND) and 36 healthy controls... The findings advance the current understanding of neural circuit pathways involved in the pathophysiology of FND...Compared with healthy controls, patients with FND showed white matter differences in fiber tracts originating from the bilateral amygdala, insula, parahippocampal gyri, temporal poles, precentral gyri, superior parietal lobules, putamen, periaqueductal gray (PAG), midbrain, pons and right hippocampus, entorhinal cortex and the isthmus of the cingulate gyrus.
WHITE MATTER IS ALTERED IN FUNCTIONAL NEUROLOGICAL DISORDER

You may also be interested in this Functional Neurological Disorder Society
Here's a list from the FND Society of three members from BC, who appear to be a Mindfulness/yoga coach, and two physiotherapists, for your info--but with no outside reviews of them.
Referral Directory; BC

Best wishes for a better tomorrow, with resources and support for a life of joy and purpose!
Nancy
4/4 and still an optimist!
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Re: New member BC, Canada

Post by TCHC »

Hi Jenpet
It's great that you're getting testing and support, even if sometimes it's a bit frustrating.
If you're able to, I'd really recommend seeing an Apollo Practitioner or a Functional Medicine Practitioner (or hopefully find someone who's both!), for more detailed, root causes testing. You may find some more lifestyle things (it may be more than just diet and exercise) or supplements that might help and no matter what the diagnoses, just dealing with all the root causes can only move things in the right direction!
Very best of luck with the research and finding the right approach for you.
Lindsey
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