This Is MS Multiple Sclerosis Knowledge & Support Community

Gordon-I have not seen much that relates the severity of the stenosis to the severity of MS. Plus, you have to realize that 29% of people that are healthy controls have the same stenosis. And yet our veins are clogged up with iron... I have five brothers and sisters, all have grown up on the same well water, they did not have any signs of MS. It take me forever to discover that I have the genetics for hemochromatosis. And it doesn't matter whether I have the stenosis or not, because everyone seems to agree that with primary progressive MS so many veins are clogged up close to the brain that they are going to do this procedure anyway. Well, I am beginning to conclude that primary progressive MS is simply caused by the fact that we accumulate iron steadily. When you look at some of the studies for primary progressive MS, our transferrin saturation is always elevated, no matter what, whereas with relapsing remitting, it seems to change... I don't think you can discount the genetics. And it is so easy to test, nobody has yet presented an argument that says testing for iron metabolism is a waste of time and money. Too many of us are showing that we load iron. What is your iron metabolism looking like?

I found the correlation between iron in groundwater and MS to be very interesting and will follow-up by researching this in New Zealand.
NZ not so long ago completed a study on the prevalence of MS in different parts of the country (I think the study was looking at this with a view to sunlight hours). I also have obtained a study on groundwater throughout the regions.

I know that the highest prevalence of MS is in Southland, this I read in a newspaper article.

I'll report back later when I get a copy of the MS Prevalence Report from 2008.

Cheers.......

PS: I have made a change to the above as I got facts back to front.

Hope410-what is your transferrin saturation, is that elevated?

I do not know what you fit into the theory or not... it is obvious that you have an iron metabolism problem, yet another one. You need iron to make myelin, and maybe some people have an inability to utilize iron. But it is still iron problems...

Do you have iron in your brain? Are they testing people for iron in the brain when they do not find the stenosis? There have been quite a few that do not show CCSVI and yet they have MS. So how are they accumulating iron in the brain??? Or do they have MS without the iron? This is yet another question I do not see being addressed. When they are checking for these blocked veins, are they also checking for iron in the brain??? And if not why not? If there is iron in the brain and this is causing the MS symptomatology, then how did it get there without the stenosis? It is not just the healthy controls that are showing stenosis without MS, it is people with MS with stenosis but no blocked veins that still have MS! I assume they have iron in the brain without the blocked veins, can somebody please explain this in any logical manner?

Right... I've done the correlation between iron in drinking water in the 15 regions in NZ versus confirmed MS in those same regions.

It's the opposite of your theory. The regions with the highest median iron in the ground water have the lowest incidence of MS.

Sorry about the mistake in the last post. I misinterpreted the regions abbreviations. All corrected.

I don't know what my transferrin saturation levels are, I'll have to pull out all my old medical records to find out.

I haven't had CCSVI investigations yet so I don't know if I have iron in my CNS. I'm waiting until treatment methods are better developed before I go for CCSVI diagnostics. I'm in Vancouver.

Merlyn,,
I dont't understand this

it is people with MS with stenosis but no blocked veins that still have MS!

isn't stenosis blocked veins?

i contacted a local lab, and they offer the following the 'Iron' tests:


Serum Ferritin
Serum Iron
Total Iron Bindin Capicity


So which test/s do i need which would indicate i have stenosis/iron leaking to the brain?

thank you

Adamt
the iron panel will just let you know how much iron is rotating within your system --it does not show you how much has accumulated in brain, or even in other organs.
The interest in iron here is that if counts are too high, you could have hemochromatosis, and therefore prone to iron accumulation. And if are prone to this, then chances are you would accumulate in the brain and elsewhere.

But even if iron counts are okay, if you have CCSVI you could be accumulating iron in the brain.
it is only a special type of MRI that will give you the info on this accumulation.

Oh for God sakes, can somebody please explain how the CCSVI paradigm can possibly explain how iron gets into the brains of people with Parkinson's, Alzheimer's, Huntington's... I feel like I am talking to some sort of vortex where this all gets lost. Iron in the brain is not unique to MS, it is found in most of the other neurodegenerative conditions. They do not have the stenosis, they have the genetics that predispose iron loading, the same as most of the people with MS are finding. Don't believe me, do the research...

... ignore

Sorry, I meant to post a URL, not the word ignore...


http://jmg.bmj.com/content/41/4/261.abstract


the C282Y is the genetic mutation I carry. My transferrin was 44%, one point shy of the cut off 45% that would immediately diagnose me with hemochromatosis. You want to pay $4500 for a venogram, go ahead, but an iron metabolism panel is a hell of a lot cheaper...

AdamT-you need to test total iron, sometimes called serum iron, TIBC (total iron binding capacity), ferritin, and transferrin... partial panels are not useful.

http://www.ironoverload.org/diagnosis.html

Hope410-has your thyroid and checked properly, including free T-3, free T4 and thyroid antibodies? Anemia and thyroid can be intimately related. When you don't have enough thyroid hormones, you do not produce enough stomach acid, which makes it hard to absorb any minerals, including iron. I have known two people with MS who symptoms resolved when their thyroid got treated properly. Sometimes vegetarians become vegetarians because meat really bothers them, they can't digest it. Probably due to a lack of stomach acid... non-haem iron is hard to absorb, I don't know if this is your problem, I am just throwing it out there. If you are in BC, they do not test thyroid properly, they will not do the other test unless your TSH is out of whack. Mine was always normal, my TSH was around 3.45 (subclinical hypothyroidism) and I have to go through the United States in order to get the full panel. I had virtually no T3, you have to be able to convert T4 to T-3 and I wasn't doing it.

Hope410-has your thyroid and checked properly, including free T-3, free T4 and thyroid antibodies? Anemia and thyroid can be intimately related. When you don't have enough thyroid hormones, you do not produce enough stomach acid, which makes it hard to absorb any minerals, including iron. I have known two people with MS who symptoms resolved when their thyroid got treated properly. Sometimes vegetarians become vegetarians because meat really bothers them, they can't digest it. Probably due to a lack of stomach acid... non-haem iron is hard to absorb, I don't know if this is your problem, I am just throwing it out there. If you are in BC, they do not test thyroid properly, they will not do the other test unless your TSH is out of whack. Mine was always normal, my TSH was around 3.45 (subclinical hypothyroidism) and I have to go through the United States in order to get the full panel. I had virtually no T3, you have to be able to convert T4 to T-3 and I wasn't doing it.

Merlyn:

Yes, I have had full thyroid panels done - perfectly normal.

I am on the thin side, so doctors are always wanting to check my thyroid to make sure it's functioning fine. And it is.

Doctors also check other vitamin and mineral levels in me to make sure I am absorbing nutrients. And I am. They're all normal.