This Is MS Multiple Sclerosis Community: Knowledge & Support

Really good point, Patientx. We do know about iron deposition in other neurological diseases. The iron in Alzheimers, Parkinsons and Huntingtons is found mainly in the basal ganglia, where death of cells due to a malfunction in neural transmitters is thought to be behind the iron deposition. But Multiple Sclerosis iron deposition looks very different than these diseases, in the fact that ms lesions are formed along the veins (periventricular) and typically in the region known as the corpus callosum. Here's some more of Dr. Zamboni's research on the unique location of iron deposition and lesions in the MS brain-


http://www.bentham.org/cnr/openaccessar ... /004AG.pdf
We know that venous reflux creates iron deposition into tissue in the legs in CVI, and in the liver in Budd Chiari. Why wouldn't venous stenosis and reflux act the same way in the brain? It's really not a matter of belief, it's just science.

The very first scientist to study MS lesions, Rindfleisch, noted an engorged vein at the center of each lesion. He just used a microscope in the 1800s.

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I think we all want answers. Surely, you can agree that the research into this theory would not be as far along as it is if it weren't for a couple of "loudmouths" on this forum. Noone is saying that we should not research this further. We WANT MORE research!!! The bottom line is that we wouldn't have gotten this far nor will we get much further quickly if we do not continue to speak up/out.
Unfortunatly,we do not have the support of big money or big pharma. The folks on this forum are just doing thier best to use their voice to get things rolling. So far the results have been pretty good, but we are not done yet because, as we keep being reminded, we STILL need more research!!!!!

Cheer, all I can say is thank you for your never-ending patience

Mark said:
It's a fine line between iron-fisted control and freedom to think. Sure, anyone can stand aside, come in and take some potshots at opportune times, that's not very impressive at all.

The longstanding information and personal stories will go further than the potshots IMO. And thank goodness!

Lyon said:
I'm not sure what you mean by "for the first time" because there are people who had rapidly progressing MS and were treated with Campath or Revimmune who are now several years out with no further progression. IS this only a situation of the loudest being proudest because, although much quieter, the Campathers and Revimmuners seem to have legitimate bragging rights.

If they felt as though that were the answer I believe they would have been screaming. I keep saying I wish someone could get inside my body and feel the difference. It is not just better...it's BETTER.

I understand the questions and the need for proof. I guess from where I sit it's easy.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

I just keep looking at it as - here is physical evidence something is wrong with these veins - get it fixed - whether it is proven that it is related to MS or not!
And in the meantime an awful lot of people do report many MS symptom improvements afterwards.

jay,
That's exactly how I went into this. If I had blockages I wanted them fixed. If it helped my MS then wonderful. It just happened to help:)

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

.

That's been my experience so far. On my honor if something bad happens, I'll report it. That simple. It's funny my best buddy called the other night, wife answered the telly, well all we talk about now is CCSVI when he calls lol. Well there IS something new almost every day now. He's tickled pink about being able to go along on my journey up North. However, (my wife told me later), he asked her, "okay I've heard his version, but how is he REALLY doing?". hahaha.

Just being able to write thousands and thousands of words a day, in emails and message boards while taking care of my two daughters full time, without blowing a head gasket, well thats a good thing. Very very good thing. My kids love it. I play outside all the time now. My idea not theirs. Lets go!

That's yet another problem with "big picturing" individuals. There's some overlap there, but whether it is 100% beyond the shadow of a doubt "proven" whatever that means, has no bearing on where I am at right now. So I'll just keep it anectdotal and let the official papers with all the fancy terminology do their thing.

Mark

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

If saying that CVI and iron deposition in other parts of the body means that the same thing definitely happens in the brain, I would consider this bad science.

The brain isn't a leg or a liver, and those diseases have very different pathologies than MS. The comparison to CVI in the legs and venous leg ulcers has been made repeatedly (both here and by Zamboni). If this model applies so well to MS, then why, in people with CVI in the legs or deep vein thrombosis, don't T cells leak from the blood stream and destroy the myelin sheath on nerves in the legs?

No one questions that lesions seen in MS are located around veins. So, it would seem to me that, if the iron is a product of the disease process, it would be seen in the same areas. But this still raises a cause and effect question.

I think it is great that many here who have had stent placement are reporting drastic improvements. It gives hope for all of us.

But consider this - many people, trying to figure out what to do about their MS, visit this site (more so since the recently publicity about CCSVI). And there are many courses to choose from. When I first joined this site, HiCy was the hot topic. In fact, it was pretty much stated that this is the cure for MS; if you didn't seek out and get this treatment, you wanted to have MS. And on another MS board, people are reporting great results from mesenchymal stem cell transplants. But, I don't see many people here reporting on their trips to Costa Rica.

So, you will have to forgive those of use who seek out some "proof." It isn't just some pedantic academic argument. We might need some good reasons to think vein treatment is the right way to go; especially considering we now know this isn't completely benign.

.

OK, ofcourse there are cases where MS patients has recovered (most of them by a diet!). But i do not believe (there is that word again ) in 'lifetime' medicins that suppress things.
On the long term, you'll have to pay for it. Suppressing T-Cells, B-Cells, cell dividing......it is needed in our body.

So that's what i also mean with CCSVI, one time action!

To share a little secret with you; i know a scientist that i actually testing the existance of iron at the first stage of a lesion.

Indeed; we need evidence, evidence, evidence!
But don;t underestimate the 'live' evidence, although scientific protocols will
never accept that But thats the way it is.....

Be patient my friends...our time will come!

Rob

Dear all,

I am an MS patient from Brussels, Belgium (Europe) and follow the discussions on this US forum with great interest. Considering the huge amount of evidence that has accummulated over the last months, I am convinced that this CCSVI lies at the root of MS and, if the blockage of veins is overcome, normal health can restore. And I guess like most of you, I want to be "liberated" as soon as possible.

People can be religious on this matter, between believers and sceptics, between different stakeholders with probably a large variety of interests, between neurorologist and vascular doctors, and with ethical committees taking perhaps less-ethical decisions. Discussions can become heated, sometimes rather philosophical in nature as we have seen above. Some people may call for more research, sometimes because that is part of their existing culture or to keep the flow of funding going, sometimes perhaps to defer, deter or delay, etc. Others then just get going and start liberating with very promising results for the patients involved.

This situation with people digging in their heels is not always helpful. One can observe exactly the same things happening in other areas when contentious issues are discussed, when big things are at stake.

Just like in other cases, in this case the weight of the entrenched status quo is huge. One just has to think about the interests of the whole ecosystem that has been build around MS over the last 50-100 years. The risk is that any reform may collapse under this weight.

In addition, as this issue is so disruptive in nature, it is likely to give a lot of fall out where it can not always be assured that patients' interests prevail over the very many different interests of this old MS ecosystem.

Fortunately. today we have this beautiful new medium. For those of you who like a bit of philosophical reflection, I can recommend the book by Brafman and Beckstrom titled the Starfish and the Spider, the instoppable power of leaderless organisations. This book now starts to apply in full for this matter.

Now, besides the discussions over here, perhaps things could be accelerated a bit if there would be some form of governance on this issue. To that end, I was wondering whether any one knows where the US Government stands on this?

Leonard

Hiya Léonard;

I lived few years in Brussels (1050 Ixelles; Boulevard Général Jacques) when I studied at the ULB

I don't know where the US Government stand on this; perhaps some of our American friends will enlighten you.

Have a good time among us; whether you are researching; learning, promoting or else

Cheers!

Algis

Leonard,

Welcome and thank you for a well thought out and eloquently written essay on the psycho-sociological phenomena that surrounds the CCSVI paradigm.

Our govenment nor the departments involved in heaalthcare, have not made any formal announcements in regards to CCSVI. The NIH (national institute of health) is investigating CCSVI as are several researchers at university hospitals, of which some are state-owned and some are private.

Because the US is so large and our medical research comes from such a wide variety of places, including drug companies and medical device manufacturers, the government's involvement tends to be more about ethics in testing and approving "saleability" of new drugs and devices for specified uses.

The US media, with the exception of a few local stories, hasn't broken the CCSVI story yet. The first one to air nationally is coming within days or weeks. Once it airs, the landscape in the US should change drastically and quickly. It will be interesting and exciting to see how it erupts.

Great explanation!

One other point to add is that maybe it is time for people interested in CCSVI to start approaching members of Congress. At some point there will be some issue that comes before them, e.g. funding for the NIH, or just something they could influence that may affect future research. While there are professional lobbyists who represent lots of corporations and industry groups, members of Congress also respond to pressure from individuals, particularly those who vote for them.

So maybe there are some of you out there from the good state of Missouri who would want to reach out to Congressman Carnahan:

"Congressman Russ Carnahan co-founded and co-chairs the Congressional Multiple Sclerosis Caucus. The Caucus serves as a forum for lawmakers and congressional staff to raise awareness and seek solutions for individuals living with multiple sclerosis (MS), a disabling autoimmune disease.

Carnahan became familiar with MS after a family member was diagnosed with the disease; last year, he was encouraged to become more involved in combating the disease by the active Gateway Area Chapter of the National MS Society. The Caucus is the first of its kind to target the specific needs of people with MS. It aims to focus on critical health care, disability and medical research issues. The Caucus is designed to help build bipartisan awareness and education in Congress about issues important to those impacted by MS. The bipartisan Caucus is made up of more than 100 members." (from his official website)

Or maybe Texas is where you live as the other co-chair resides there (from a press release):
"Congressman Michael Burgess, M.D. (R-Texas), made the following remarks this morning after receiving the Multiple Sclerosis (MS) Society’s House Legislator of the Year Award..."

Or how about Ohio? (from her website):
Congresswoman Mary Jo Kilroy (OH) "apparently the only person diagnosed with MS to ever be elected to Congress."

Perhaps it is trite, but we could call or write or visit these members of Congress...

_________________
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri