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23andME PD Genetic Research


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#41 Bernard Shakey

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Posted 13 March 2015 - 03:06 PM

Linda, I live in New York and to do the test I had to sign a waiver that I would not give my sample or mail it back from the state of NY. It has something to do with New York classifying 23 and me as a medical lab, but since they didn't meet state regulations/standards it was illegal for them to collect samples in NY. I assume Maryland has similar, but more restrictive regulations. I had to go across the river to New Jersey to spit in the tube and mail my sample.


  • TexasTom likes this

Diagnosed: Dec. 2014 (Age 52)

First symptoms: In retrospect, probably late 90s: stiff shoulder

Meds: Currently none, but I have started a 4-5 times a week exercise program


#42 gravdav

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Posted 08 May 2015 - 12:01 PM

Thank you, Laura.

 

Now back to why I started this post... Is it possible that a Micrographia Srceening test for children be used? They could print their name on a sheet of paper, letting a trained eye either dismiss or confirm a potential diagnosis of Parkinsons, all the while without noticeable physical movement dead giveaways. This why I say that there is no such thing as YOPD. Only "Parkinsons and people with the onset of Advanced Aquired Parkinsons [AAP]."  If we could tell of a possible furture life that will have to deal with all the symptoms of Parkinsons, why not let them prepare for this job's undertaking. [And I am NOT meaning to sound macabre.] They could start with the good diet of anti-ox foods and vitaman E supplements. The sceintific would an can now view Parkinsons from a different angle! Not from standpoints of the already afflicted!



#43 Dancing Bear

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Posted 29 December 2015 - 08:05 PM

Just got my 23andme test results and they currently do not provide health risk assessment info per FDA directive.  Is there a readers digest version of how to interpret the raw data for genetic markers for PD?  Thanks for any help.  

 

DB


Male, Age 62,  DIagnosed PD April 2013, DatScan + Symptoms 
Meds start June 2015   (Sinemet  25/100  1 Tab 3x/Day)
Diagnosed OSA July 2015  Using CPAP with good results 
 
Not taking even the next hour of my life for granted!
 
 
Internet Resources 
Christian Courier      www.christiancourier.com
Apologetics Press    www.apologeticspress.org
 

#44 New normal

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Posted 01 January 2016 - 08:06 AM

Gravdav

I totally get what you are saying...and early detection would be great. There are forum members who say they have had PD since childhood, but not diagnosed until after fifty. I think they are finally recognizing it is not an old age disease.

Like you, I would think it would be easy to get some kind of early testing. Specifically, on handwriting...which I know you used just as an example...I am in stage 3...I have little trouble with hand writing... I write big...and not slanted....if I try to,write small. Yes, it is not good....what I am saying that hand writing is a broad subject matter to best indicate PD early...but I agree with you totally that early detection would be good...at first, not as helpful...as later, when they redefine PD and apply more research because it will be proven that PD spans a much larger demographic than thought.
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>

DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 3x per 24 hr.

#45 swva

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Posted 03 January 2016 - 01:13 PM

Signed up  yesterday on the 23andme website. Answered a bunch of questions. Now just have to spit and send the sample when I receive the packet. Interested to see the outcome, but kind of apprehensive too.


44 yr old male

Noticed tremor December 2014

Diagnosed March 2, 2015

3 Sinemet CR 25/100 per Day
2.5 mg Isradipine twice a day


#46 AB-Normal

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Posted 03 January 2016 - 02:41 PM

same here SWVA, I just received my packet... now to spit and send.........


Michael
Current age= 56
First symptoms: 1975
Dx.
Parkinson's Disease, Apraxia
Med's
Carba/levodopa 25/100 ER 4 times a day
Amantadine 100mgs twice a day

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14

"I will do what i can, while I can, and when i can't, I'll do something else"
remember folks.................
KEEP CALM, and PARKIE ON...............

#47 Hope

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Posted 21 February 2016 - 04:14 PM

my understanding is that you have to have the results analyzed by a doctor in order to get useful information about

how you might address your PD (what kind of supplements, etc.).  I am waiting for my results now, and I have a very

research oriented psychiatrist who is going to read them for me.  I know there are services that also do this, though 

obviously it is better with a physician who has been involved in PD care. 

 

Still no response from my email request from 23andMe for clarification but I have been reviewing the results with a little more clarity. If I am understanding correctly, it says I have a decreased risk for PD ("slightly lower odds of developing PD, between 1 and 0.67 times typical odds/risk.) I don't know what to do with this information but will certainly share this with the Dr. next visit. The other results are interesting, so far nothing earth shattering. I guess I was under the delusion that this test would either exclude you or include for PD.

s



#48 swva

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Posted 22 February 2016 - 08:01 AM

I received my results about a week ago. The 23andme results are very general and do not discuss analysis relating to Parkinson's. You can go to Promethease.com and upload your 23andme results and get a detailed report regarding your genetic results relating to many health issues for $5. It took about 3 minutes to get the reports by email.
  • MurrayPD2 and secret squirrel like this

44 yr old male

Noticed tremor December 2014

Diagnosed March 2, 2015

3 Sinemet CR 25/100 per Day
2.5 mg Isradipine twice a day


#49 MurrayPD2

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Posted 22 February 2016 - 08:23 AM

I received my results about a week ago. The 23andme results are very general and do not discuss analysis relating to Parkinson's. You can go to Promethease.com and upload your 23andme results and get a detailed report regarding your genetic results relating to many health issues for $5. It took about 3 minutes to get the reports by email.

I did this... it was definitely worth it!  23andMe does provide genetic counseling that can go much deeper into the PD genes and more, but I have mostly looked online at 23andME forums and the report listed above.  I am sure the genetic counselor will provide a lot of help, I am just not ready to do it. 


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#50 Beau's Mom

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Posted 23 February 2016 - 09:47 PM

I received an email today that said it was from 23andme, saying that unless I sent the name and address of my treating doctor via return email, I would not be allowed to participate in the study. I refused. I am sharing this because no reputable research organization would ask for such identifying information via email. If you get the email, I recommend you delete it and contact 23andme through their secure website only.

 

Dianne


  • secret squirrel likes this

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

 

Diagnosed December 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml.  Trazodone 150 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 135 caregiver hours per month keep me moving.

 

Edited 2/5/2016


#51 swva

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Posted 24 February 2016 - 07:02 AM

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.

44 yr old male

Noticed tremor December 2014

Diagnosed March 2, 2015

3 Sinemet CR 25/100 per Day
2.5 mg Isradipine twice a day


#52 adams234

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Posted 25 February 2016 - 07:27 PM

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, 25 February 2016 - 07:27 PM.

Adam

Current Age 37

DX December, 2014 YOPD at age 35.

March 2015 received DaT scan, results positive for dx of PD

July 2015 accepted into the Steady PD3 trail now taking Isradipine study drug.

October 2015 1mg Azilect once daily.

November 2015 25/100mg carb/levo 1.5 pills 3x daily

Also using Diet and Exersise to Maintain health.  

 


#53 Natasha

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Posted 25 February 2016 - 08:06 PM

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 :)
diagnosed Oct 2010
Azilect , Amantadine 100 mg x 1, Requip Modutab 8 mg x 1 ,Levadopa/Carb 250/25 1/4*4 (= 1 tablet a day)
Yoga , Tai Chi

#54 MurrayPD2

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Posted 29 February 2016 - 02:41 PM

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. 


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#55 Waywrd1

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Posted 26 April 2016 - 07:26 PM

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. :)



#56 TexasTom

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Posted 28 April 2016 - 02:00 PM

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....



#57 SNPedia

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Posted Yesterday, 04:12 PM

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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