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23andme Results
Posted: 19 February 2013 04:52 PM   [ Ignore ]  
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I haven’t been on here that much lately, as I have been pretty sick and distracted. Anyway, I have my 23andme results for both myself & my daughter (and boy do we have methylation issues). I was wondering if you guys are collecting results & where I should send this info.

I also have upright MRI imaging for both of us, which I would be happy to send some pics if that would be helpful.

TIA

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Posted: 20 February 2013 12:25 PM   [ Ignore ]   [ # 1 ]  
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MattiesMom - 19 February 2013 04:52 PM

I haven’t been on here that much lately, as I have been pretty sick and distracted. Anyway, I have my 23andme results for both myself & my daughter (and boy do we have methylation issues). I was wondering if you guys are collecting results & where I should send this info.

I also have upright MRI imaging for both of us, which I would be happy to send some pics if that would be helpful.

TIA

Hi MattiesMom! So good to see you again! LOTS of us have methylation issues, I’m afraid. Did you see this video? http://prettyill.com/videos/watch/thrombosis_anyone_mthfr_results
(cut and paste into your browser)
My research is telling me that folks who have such issues can go down harder and faster, but these methylation problems are not the underlying problem. They exacerbate it, however and need to be evaluated. There are a few great threads on Prettyill’s facebook and forum (search function helps) for more info.
I got DELUGED with MRI’s, and am now only taking them IF they can come with MRV’s, too. We need both to explain the whole story. Cool?
Hang in my friend, as I work frantically to wrap up what I learned.
BIG hug, Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 01 March 2013 02:31 PM   [ Ignore ]   [ # 2 ]  
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How many doctors actually believe in this test? Just curious.

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Posted: 01 March 2013 09:29 PM   [ Ignore ]   [ # 3 ]  
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sadiehgt - 01 March 2013 02:31 PM

How many doctors actually believe in this test? Just curious.

I think it depends on the doctor and the condition. Many invisible illness patients are comparing notes, and it has been amazing. Frankly, I never thought about asking my doctor! As commander of my own ship, I wanted to know! This seems to be fairly patient driven for many of us as we compare MTHFR defects, CBS mutations, etc. I do believe it will give us spoonies critical info, no matter what our doctors say… smile

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Posted: 01 March 2013 09:38 PM   [ Ignore ]   [ # 4 ]  
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Was curious because my geneticist at Mayo today blew it off. I am still going to do it regardless because he also didn’t win my vote as a patient. He kept telling me all my problems are caused by my hyper mobility but refused to give me a diagnosis despite a 5/9 on the Beighton scale and meeting all the minor criteria for EDS. Then he said even if I have EDS there are no genetic tests to prove it so he said he wasn’t going to “label” me. I am beyond frustrated that a doctor would refuse to diagnose. He said I also have osteoarthritis too young for EDS. His reasoning was if he diagnosed me with EDS no other doctor would take me seriously with my other issues. If you read Mayo’s EDS page it will say a proper diagnosis of EDS helps the doctors form a team of physicians to meet the complexity of each individual because no two are alike. So if his colleagues are on board then why the hesitation to label me…. Yeah I am ticked today!
Then he said he wants to see my daughter when she is 7 because if she is a 9/9 on the eds scale then she must of got the gene from me…. I wanted to say the disease you refuse to diagnose me with.
On the note of the MTHFR gene… He believes I have it. I did have him laughing when I said you mean “the mother you know what gene”. He said I guess you could call it that… Lol
So back to my allergist who is the only one listening.

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Posted: 03 March 2013 08:46 AM   [ Ignore ]   [ # 5 ]  
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sadiehgt - 01 March 2013 09:38 PM

Was curious because my geneticist at Mayo today blew it off. I am still going to do it regardless because he also didn’t win my vote as a patient. He kept telling me all my problems are caused by my hyper mobility but refused to give me a diagnosis despite a 5/9 on the Beighton scale and meeting all the minor criteria for EDS. Then he said even if I have EDS there are no genetic tests to prove it so he said he wasn’t going to “label” me. I am beyond frustrated that a doctor would refuse to diagnose. He said I also have osteoarthritis too young for EDS. His reasoning was if he diagnosed me with EDS no other doctor would take me seriously with my other issues. If you read Mayo’s EDS page it will say a proper diagnosis of EDS helps the doctors form a team of physicians to meet the complexity of each individual because no two are alike. So if his colleagues are on board then why the hesitation to label me…. Yeah I am ticked today!
Then he said he wants to see my daughter when she is 7 because if she is a 9/9 on the eds scale then she must of got the gene from me…. I wanted to say the disease you refuse to diagnose me with.
On the note of the MTHFR gene… He believes I have it. I did have him laughing when I said you mean “the mother you know what gene”. He said I guess you could call it that… Lol
So back to my allergist who is the only one listening.

Boy, can I relate to this! I had to fight to be diagnosed, too! The geneticist, however, said that she knew I had it as soon as she shook my hand. Yikes. MTHFR - did you see my video about that? I thought for sure I would have that defect! Nope. BUT, I think it is important to be checked. Luckily, LabCorp can do that test for you, without you having to jump through hoops! The MOTHA’ gene! hee-hee. wink

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Posted: 03 March 2013 03:09 PM   [ Ignore ]   [ # 6 ]  
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My husband works for Labcorp. What other tests can they do? They are free for me. Does 23andme test for the MTHFR gene?

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Posted: 03 March 2013 05:13 PM   [ Ignore ]   [ # 7 ]  
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Diana, Is there a link to alzheimers and MTHFR? That is a big problem in my family and I was really worried when my photographic memory was slowly going away. I am glad that the singulair is helping but I am not 100% with the memory. Especially short term to long term. I do better in classes that last 5-7 weeks rather than classes that go for 3-4 months because I can learn and dump.

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Posted: 03 March 2013 10:18 PM   [ Ignore ]   [ # 8 ]  
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sadiehgt - 03 March 2013 03:09 PM

My husband works for Labcorp. What other tests can they do? They are free for me. Does 23andme test for the MTHFR gene?

Cool! Here’s the vid about it: http://youtu.be/tlnXKgiyrpY  And yes, 23and me also checks for it (INTERPRETING it is a journey, however!). smile

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