New here? Some Best Practices

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Roobinsky
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Re: New here? Some Best Practices

Postby Roobinsky » Tue Sep 18, 2018 3:07 pm

New here. I have not been tested yet and would like information regarding reputable labs. Both my grandmother and mother have had Dementia.

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GLS18
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Re: New here? Some Best Practices

Postby GLS18 » Tue Sep 18, 2018 6:55 pm

A warm welcome to our community Roobinsky!

I appreciate your courage in wanting to explore testing. Knowing this information can be helpful in personalizing a wellness plan best suited to your needs. Whatever you decide, genes only account for 25% of the picture and you amazingly have control over the remaining 75% through lifestyle factors such as diet/nutrition, movement, sleep, relaxation, and positive relationships. For detailed information about testing, Thinking About Testing? is a fantastic place to begin.

Through this supportive community, you will find a great deal of valuable information. The Primer and the many forums on this site provide a wealth of resources. Our How To Get The Most Out Of The ApoE4.Info Website is a brilliant step by step guide for navigating the website. Section 5 of this guide explains how to search the site for a particular topic of interest like genetic testing.

We would love to hear more about what led you here. If you would like to share your story, please do so here: Our Stories

Looking forward to your contributions , questions and insights!
Gina
Functional Medicine Certified Health Coach
Reversing Cognitive Decline For Coaches Certification Candidate, Fall 2018
"Live as if you were to die tomorrow. Learn as if you were to live forever." - Mahatma Gandhi

Roobinsky
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Re: New here? Some Best Practices

Postby Roobinsky » Wed Sep 19, 2018 3:43 am

Thanks for your kind and informative reply. I will consider the testing further. I found the questionnaire very helpful as well as the primer.

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slacker
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Re: New here? Some Best Practices

Postby slacker » Wed Sep 19, 2018 8:59 am

Roobinsky wrote:Thanks for your kind and informative reply. I will consider the testing further. I found the questionnaire very helpful as well as the primer.


Hi Roobinsky;

GLS18 has proved some great links for you, especially the one to help you contemplate whether you really want to test your ApoE status.

Many members come to us after finding out their ApoE4 status unexpectedly through 23&me testing. A handful have reported that the 23&me results were incorrect on retest with another company (ex. Labcorp, True Health Labs, Life Extension). 23&me gives its clients raw data, which needs to be converted into easier to interpret results. This can be done with a variety of tools such as Promethease. If you decide to test, doing a search (magnifying glass in tool bar right upper corner of website) on "promethease" will allow you to read up on how to do this as well as other thought provoking related topics.

Good luck, and welcome! We are here to learn together.
Slacker
E4/E4

rainbowsigns44
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Re: New here? Some Best Practices

Postby rainbowsigns44 » Sat Sep 22, 2018 5:12 pm

how do I find a practioner to help diagnose my symptoms?

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CoachJD
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Re: New here? Some Best Practices

Postby CoachJD » Sun Sep 23, 2018 4:21 pm

rainbowsigns44 wrote:how do I find a practioner to help diagnose my symptoms?


Hello and a warm welcome to our community! There is a LOT of information on this site, so I hope you've had a chance explore, starting with https://www.apoe4.info/wiki/Main_Page#. ... fo_website

To find a ApoE4 Practitioner, you can check out this page on the wiki : https://www.apoe4.info/wiki/ApoE4-Aware ... ctitioners.

Please let us know if we can be of further service to you on your health journey.
Joan Dickason, FMCHC
National Board Certified- Health and Wellness Coach
Reversing Cognitive Decline For Coaches, CertificationPending Fall 2018
"Pain is inevitable. Suffering is optional " Haruki Muraka

NF52
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Re: New here? Some Best Practices

Postby NF52 » Sun Sep 23, 2018 8:50 pm

rainbowsigns44 wrote:how do I find a practioner to help diagnose my symptoms?
Welcome Rainbowsigns44! What a lovely name! I’m guessing that you have APOE 4/4, like me. Not sure how recently you found out, but know that it was a huge shock to absorb when I found it 4 years ago. Life is much better now that I have access to current, accurate information, the support of people on this forum and my family, and the chance to be in a clinical trial. (I’m 66 ad still healthy.)
If you feel comfortable sharing what your symptoms are, or what you feel is different, it might be easier to narrow your search. Some people have a sense that they’re not able to juggle as many tasks, others that they take longer to remember names, or are more tired.
Not every “symptom” is necessarily a sign of something terrible. Being tired and stressed when you have teenagers and are in peri menopause is pretty common, for example. You may want to start with asking your primary care provider to run some basic tests to rule out things like anemia, low thyroid, and to check your glucose tolerance and cholesterol. Having some tests paid for by insurance could mean less out of pocket costs.
We’re here to support you. There are many paths to feeling better. I hope you check out Stavia’s Primer. You can find it on the Welcome page and in the second forum topic under Getting Started.
Hugs from another 4/4, Rainbow!
4/4 and still an optimist!

Walt47
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Re: New here? Yes. Feedback please.

Postby Walt47 » Sat Jan 19, 2019 11:10 am

Hi Everyone! I am new here having just been diagnosed yesterday with A.D. This was in my radiology report and am wondering if someone could help me understand what it means. The Dr. I saw only told me I have iA.D and prescribed some drugs with terrible side effects. Here is part of the report. The rest was all normal: The structures of the middle line, calloso region pineal and interhemispheric cynicism do not alter. The ventricular system quietly increased by volume, the furrows have prominent subnumeracnoideic spaces by subcortical cortical atrophy.
This was translated from Spanish so I hope it makes sense to you.
Thank you for your help and consideration,
Walt47

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Re: New here? Yes. Feedback please.

Postby NF52 » Sat Jan 19, 2019 3:06 pm

Walt47 wrote:Hi Everyone! I am new here having just been diagnosed yesterday with A.D. This was in my radiology report and am wondering if someone could help me understand what it means. The Dr. I saw only told me I have iA.D and prescribed some drugs with terrible side effects. Here is part of the report. The rest was all normal: The structures of the middle line, calloso region pineal and interhemispheric cynicism do not alter. The ventricular system quietly increased by volume, the furrows have prominent subnumeracnoideic spaces by subcortical cortical atrophy.
This was translated from Spanish so I hope it makes sense to you.
Thank you for your help and consideration, Walt47
Hello Walt 47!
I am sorry to hear that your doctor gave you such important news with so little explanation! If it's possible, I would suggest that you ask for a follow-up appointment to get some of your questions answered. Since this was a radiology report, I am guessing that you had an MRI of your brain. It looks to me (and I am NOT a doctor but have read more than a few MRI reports!) that the first line is good news: "The structures of the middle line, calloso region pineal and interhemispheric cynicism do not alter" might not have been translated exactly, but seem to refer to the corpus callosum, a thick band that separates the left from the right side of your brain, and helps the 2 sides "talk" to each other. Sometimes
in brain injuries such as strokes or trauma, one side of the brain swells and actually moves the corpus callosum off center a little in what is called a "midline shift." The radiologist seems to be saying he does not see this "altered" at all. "Interhemispheric cynicism" is a strange translation, but I would guess he is ruling out any pressure from one hemisphere (side) of your brain against the other.

The report uses the word "atrophy" which means some brain structures are smaller than expected. This is sometimes seen only in one or two areas in early Alzheimer's, especially the hippocampus, which helps us form and find memories. The terms "subcortical cortical atrophy" appear to be referring to either atrophy in some of the higher thinking areas of the brain (the cortex, or cortical area) and the sub-cortical area, where connecting "fibers' carry information from one area of the brain to another.

What got translated as "prominent subnumeracnoideic spaces" sounds like the term "subarachnoid" Here's a definition of that space I found: "The space between the arachnoid membrane and pia mater that is filled with cerebrospinal fluid and contains the large blood vessels that supply the brain and spinal cord." https://www.dictionary.com/browse/subarachnoid-space People who have falls or other traumatic brain injuries sometimes develop "subarachnoid brain bleeds". My layperson's understanding is that this space is outside the brain's key structures, but carries blood and cerebral spinal fluid which is important for your brain's health.

The report also days the "ventricular system quietly increased by volume"; I think that might translate as the "ventricular system is greatly increased by volume". we have 4 ventricles in our brains: I think of them as pockets that carry spinal fluid around for your brains. If they have "greatly increased" it may be tied to the areas of "atrophy" in the ares that help us think. As one area shrinks some, the ventricles expand to take us the extra space.

Still a lot of confusing terms!! I think what is most important for you, my friend, is to have someone who can answer the questions that you need right now, and those that would help you in your every day life. What is on an MRI scan does not decide how you live your life. It may be that those pills he prescribed won't have bad effects for you. It may also be that you can make some changes in your diet or exercise or how you get help with finances or other areas that will make it much easier to deal with this diagnosis.

I hope you feel comfortable going to whatever local agency is in charge of health services and asking for some help. If you feel comfortable telling us what country or city or region you live in, we might be able to find some places that are ready to help.

There may be someone on this forum who is fluent in Spanish who can reach out to you with more support. But please know that you are very brave to take the step to ask questions and want answers. We agree that you deserve them!
4/4 and still an optimist!

Walt47
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Re: New here? Some Best Practices

Postby Walt47 » Sat Jan 19, 2019 3:36 pm

Thank you NF52 for your prompt and informative response. I live in Cuenca, Ecuador and have the country's health plan. I have a follow up with the Spanish doctor, who speaks little English, on the 30th but don't think he's going to respond well to my not following his protocol of bad side effect drugs. Thank you for your kindness and understanding.


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