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adiaz

23andME PD Genetic Research

63 posts in this topic

When registering your sample online, it asks for your Doctor's information. I would guess they need this to verify that you are diagnosed with PD. Otherwise, anyone could say they have PD to get the free test.

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Once I registered my kit, I put my doctors name in and hit enter. 20 seconds later it said you are not qualified for the study. I sent the kit in anyways and they gave me the results. Not sure why it said I wasn't qualified but still was able to use the site and take surveys and see my ancestry. So it was worth it. 

Edited by adams234

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Got the report from Promethease .

Strange. My grandma had PD, but looks like there's no mutation in "PD genes", so it is not genetic - do I miss something?

Instead my chances to get Alzheimer are 2 times bigger than normal!

 

During the latest visit to my MDS they took my blood sample for some researches, so I will probably receive the results , would be interesting to compare.

 

About children: my MDS said that in the moment she has vaccine for PD (she hopes to get it soon) she will make genetic tests for all the children of her patients - but not a day before. The test indicates only chances to get PD, even if they are high it doesn't mean you will get ill.

 

Our children "could start with the good diet of anti-ox foods and vitaman E supplements" in any case , they should not wait for a genetic test results to do it :)

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My Promethease report seemed to make sense.  I have a double mutation in the MTHFR gene and my daughter has epilepsy.  I think I also had the LRRK gene that had some contributions.  It seems the right combination of genes and environmental influence cause the process to begin. 

 

I don't know if the VA will agree it is service connected for my case, but they already linked agent orange as a chemical that can cause PD. 

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I got my 23 and Me, as interpreted by Promethease, and I might not be reading it correctly, but I thought it was displaying a statistical chance of developing something rather than you definitely have an issue at X,Y & Z. 

 

I bring it up because the report was kind of comical, and gave me the "results" for items like prostate cancer.  Which would be a trick, as I'm female. :)

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Hi Waywrd1 -- Correct they show "what are the odds of.... ".   With Parkinson's there is roughly a 1 in 1000 statistical likelihood anyone will have PD in their life time.  So if you are are genetic carrier, and "2x as likely"  that just means you are roughly 1 in 500 change of developing PD.    Odds of dying in a car crash is 1 in a 100.   So the takeaway is to drive safe and not worry.

 

Somethings, like hemocrosis(spelling? -- producing too much red blood cells) is a good thing to know, but majority of items listed are pretty benign.

 

Two I thought were interesting is "cilantro taste like soap" (I was negative) and "likely to smell asparagus in urine".  (That is a very distinct odor!).   Both my wife and daughter hate cilantro.  Rest of use like it.   On the asparagus smell,  about 50/50 in the family.

 

Glad to hear you are not likely to have prostate cancer!  You do wonder sometimes....

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Waywrd1 -- there's a serious reason why we report all associations to both males and females, even if it provokes some snickers ...

 

Women inherit mutations from their father, women have brothers carrying shared mutations, and women pass on mutations to sons. Men inherit mutations from their mother, men have sisters carrying shared mutations, and men pass mutations on to their daughters.

 

So the risk that's reported in your Promethease report for prostate cancer may not be relevant to you directly, but it could be to your male relatives, just like a BRCA-based risk of ovarian cancer reported in a Promethease report for a guy could be very relevant to his female relatives.

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Has anyone sent their 23 and Me raw data to a company for analysis of genetic mutations and risk factors for things like Alzheimers etc? If so can you share who did it and how much it cost? Not looking for counseling per se.

Thanks in advance.

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I used this tool once:  https://www.promethease.com/

 

It was very enlightening for me.  It was cheap.. $5.  However, it is a simple interface and unless you look up some things yourself, you may need a genetic counselor to walk though it with you.  I took the report and did some research with it.  I found a lot of answers by doing that, so it was well worth it.

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Thanks Murray!   Just what I was looking for.  Spent the $5 and am finding the report enlightening.

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I had some difficulty in trying to follow the links to participate in the process of genetic testing from 23andME.  First I clicked on link, but the web page indicated Sorry, web page no longer available.  Next I called the National Parkinsons Foundation Help Line.  The person who answered was informative, and is emailing me with info as to why the link on the website ends with the Sorry message, and also to determine if the program is still available. 

Next, from our co-member Peace's post just above, I tried the MJFF website.  I maneuvered thru the registration under Trial Finder and searched for 23andME.

Sure enough, the 'trial' seems to be continuing after 11,000 participants have already enrolled.  I emailed the contact and I am hopeful that I will be contacted and sent the testing kit.  To help any new member that is interested in the  FREE 23andME offer (apparently with collaboration and support from the MJFF), here is the email to 23andME that hopefully will result in allowing continuing participation:  pd-help@23andME.com

Additionally, I think the NPF may update the info on the  (this) website to facilitate access to this worthwhile program.

I hope it works out...

Manolo

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