endoterin 1?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby jimmylegs » Tue Oct 26, 2010 3:39 pm

i would be quite interested to see results of an ET-1 test along with a zinc test. i'd like to know if my results match the average MS patient for zinc and ET-1, or the average healthy control :)
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Postby Johnson » Tue Oct 26, 2010 3:58 pm

jimmylegs wrote:i would be quite interested to see results of an ET-1 test along with a zinc test. i'd like to know if my results match the average MS patient for zinc and ET-1, or the average healthy control :)


jimmylegs,

How do you go about getting your blood values tested? Does OHIP pay for it? Do you have a curious GP - filled with curiosity? I have the impression that you work in the field; are you drawing and testing your own blood?

Thanks in advance.
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Postby jimmylegs » Tue Oct 26, 2010 6:03 pm

hi johnson,

i have a GP that had to monitor my iron status and b12 levels throughout the the latter years of my 'vegan era'. i was a complete idiot back then, did everything wrong.

after my msdx, the doc was receptive to the stack of literature i brought in to support my early request for nutrition testing beyond my usual stuff (vitamin D3 was my first step towards MS-related testing).

OHIP pays for a bunch of stuff, but not everything. the govt just took vit D3 off the list of things they cover, with certain exemptions of which ms patients are not one. any time i've paid for a test it's been around 30 to 35 dollars, but i hear d3 can go as high as 200, so shop around (unless you qualify for an exemption under the new rules - if you do you might still get free d3 testing)

i have never ever asked for an ET-1 test but there is a schedule of tests covered by OHIP and if i found it was covered, then took in the relevant abstracts to my doc, i imagine i could ask for a requisition. however, it's more for academic interest not need per se so i may not follow through on the ET-1 idea.

i'm the one to blame for curiosity and i have NO medical qualifications, and i don't work in the field either. i have background in environmental studies with a specialization in ecosystem restoration.

my approach is very much viewing self as ecosystem and restoring it using nutritional status as an array of 'indicators', and using healthy controls as 'reference sites' to compare and assess and monitor over time.

so anyway, i depend on my doc for everything except research and assessment of results. all i have is a good background in assessing scientific research and a pretty vested interest in keeping the ecosystem that is me, in tip top condition.

at this stage of the game when i walk in my doc's office for any appointment i might have a post-it with a list of tests written on it and without my specifically asking for a requisition, when the doc spots it the requisition pad comes out, and i say thanks and head to the lab.

later i get the results (which are almost always 'normal') and assess whether they are 'healthy normal' or 'ms normal'

and then i come and post the results here :) heheh
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Postby Johnson » Tue Oct 26, 2010 6:46 pm

Thanks jimmylegs. I wish I could have such a GP. I don't even look for one now, I just do my own research and take what avenues I can. A problem too, is some of the testing. The Lyme test is notoriously useless (in Canada), and it seems, the standard Vit. D test looks at just 25 D and not 1.25 D, which I'm gathering, is more important a measure (in some measure).
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Postby jimmylegs » Tue Oct 26, 2010 8:10 pm

hi johnson,

what avenues do you now try/ find successful?

i have never asked for a lyme test.

my first blood test for vit d3 went in for 1,25 dihydroxyvitD3 when i wanted 25 hydroxyvitD3.

it was the pending units (pmol/L vs nmol/L) that gave things away. i fought hard, but never was able to get a real 25-hydroxy baseline.

1,25 is not more important - it's different. 25hydroxy is the supply for generating 1,25. 1,25 is tightly controlled by comparison to 25 D3.

sorry for butchering the chemistry :)

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