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

Postby Lyon » Sun Apr 11, 2010 5:39 pm

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Postby AlmostClever » Sun Apr 11, 2010 6:03 pm

Lyon wrote:
bretzke wrote:

There are 5,000 interventional radiologists in the US and they could do 400,000 angioplasties in a remarkably short time if push came to shove (80 per IR, 2 angio's per day...a month or so?)


Very good Lyon!

I was wondering what these numbers might be the other day. This in itself would prove that flood for treatment is not a good reason for the NMSS or neurologists to suggest waiting years for studies to convene. The infrastructure is in place or could be soon. Echo-doppler training could be carried out very quickly - a month or so?

It is not unrealistic to think that every American with CCSVI could be diagnosed and treated within 6 months!

I was corresponding with an old doctor friend of mine who has had MS for 20 years. He's done everything - the CRAB's, Hi-Cy, Tysabri - nothing helped him. I asked him about CCSVI (he admitted he did not quite understand it) and he told me there was nothing to lose! It is low risk for diagnosis and procedure - why wouldn't anyone do it? It's not like you're going through chemo and weeks of recovery or risking brain infection! It's a freakin' no brainer!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby WeWillBeatMS » Sun Apr 11, 2010 7:12 pm

Long live "Anecdotal Evidence"!


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Postby AlmostClever » Sun Apr 11, 2010 7:39 pm

Please forgive that bit of testimony about my friend. I realize it doesn't help promote or prove the validity of CCSVI (or the invalidity of other treatments). Just thought I'd share it...

Point is the U.S (and probably most countries) could handle CCSVI treatment.

CTV is really helping by continuing these broadcasts and I pray that we will soon see this sort of buckaroo broadcasting in the U.S. - not just little snippets on page 4 of a small town newspaper.
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Lyon » Sun Apr 11, 2010 7:53 pm

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Postby whyRwehere » Sun Apr 11, 2010 11:48 pm

How embarrassing, to agree with and quote Freedman (and what an ironic name to oppose liberation).
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Postby Lyon » Mon Apr 12, 2010 3:49 am

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Postby Billmeik » Mon Apr 12, 2010 5:29 am

someone should say whoa to Freedman. That immune system transplant stuff he's doing makes some huge and probably wrong assumptions. The patient needs a new immune system because their old one is 'broken'. No, treating the immune system is wrong and unethical because ms is probably not an autoimmune disease. We're talking big harm. In the name of what's 'right'. Big 'right' paid for by big science.. Probably wrong right...
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Postby cheerleader » Mon Apr 12, 2010 6:44 am

and just so we're clear, all immune ablation therapies are based on the EAE theory of Dr. Rivers from the 1930s. He created demyelinating lesions in rhesus monkey brains by injecting them with brain cells from rabbits. The original name was experimental allergic encephalomyelitis--now the A is for auto-immune.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2212888/

Critics of the EAE model question whether this animal model is truly reflective of human MS, as many EAE models trigger a specific acute syndrome, whereas most human disease involves cycles of relapse and remission. Vijay Kuchroo (Harvard University) defends the EAE model, pointing out that “each model recapitulates a small piece of the human disease,” and has provided valuable insights into the human disease. Lawrence Steinman (Stanford University) seconds Kuchroo's sentiments, adding, “To say that EAE has little to do with MS would be to ignore that two approved treatments for MS [Copaxone and Tysabri] were developed as a result of experiments in the EAE model.”


The best defense of this theory is that the drugs created to stop EAE in mice work in mice and it seems to be "a small piece of the human disease"... and death (from PML, liver and heart failure) is an acceptable risk based on this theory. What is so wrong with studying a new mechanism? WHOA!!!
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Postby WeWillBeatMS » Mon Apr 12, 2010 8:41 am

It's too bad there's nobody in TIMS that's buddies with Michael Moore at MSU. WHOA! He could do a documentary about CCSVI. Heck, he could even debut it at Joe Louis arena in Detroit and have the Zamboni machine there as a prop and he could confer with Dr. Mark Haacke at Wayne State University for information.

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Postby zinamaria » Mon Apr 12, 2010 10:54 am

Whoa??????? Whoa????? Slow down?? How to tell someone in a wheel chair to slow down? How to tell someone with a walker 'slow down'? (Frankly it is cruel and inhuman).
Whoa?? Is he insane? 'Oh yes, so sorry; I see you've been slowed down for twenty years now, but please, slow down will you, get a little more comfortable in your slowed down position in your wheel chair or with your walker..and you know, slow down'. (Sounds like a Kafka short story).

Freedman says. "Why would you fix something that may not have anything to do with the disease?

May not? Can we put a period, Dr Freedman, at the end of 'fix something'?
Short answer: Who cares if it has anything to do with the disease or not. Those of us with MS AND CCSVI are leaving it up to the researchers to make the link (but not totally because there are so many intelligent people on this site, and Doctors like Sclafani recognize this and rather than ask less than intelligent questions, like the one above, is actually getting involved). Maybe if we're lucky we'll all be around to find out in our lifetime if this is the link we wish it to be.
In the meantime, if blood is not properly flowing to my brain I want to be treated for it, regardless of 'it may or may not have anything to do with MS'! If it makes one's pinky toe turn pink instead of blue, if one can pick up a fork for the first time in ten years, if one can breathe better at night etc etc etc etc is this not good enough for WHY??? Do we need to see 'drastic' results to feel we are then worthy of treatment for a hair's breadth of better quality of life? Do we really need to 'know' if this is a 'cure' or not to feel the smallest shift in our quality of life? Am I not capable of saying MS AND CCSVI, together, or separate, or whatever? I have MS and I don't even call it MS! Because no one knows what the hell MS is anyway. BUT we DO know what CCSVI is! It's a sure thing that can be seen and identified, and 'pin' pointed.

How long are we going to go around the maypole about MS and its mysterious nature, how long are going to go around the maypole about needing proof? Can we not accept the fact that we are at the stage where we are seeing that there is a disease called MS AND a condition called CCSVI AND that they are somehow related. One has never had a 'cure' the other CAN be treated, THAT is a fact. They are not the same, but they are not mutually exclusive categories either.

'Where will I go when I get off the bus?'

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Postby Lyon » Mon Apr 12, 2010 11:36 am

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Postby whyRwehere » Mon Apr 12, 2010 11:38 am

Frustration for you and Freedman, anyhow....isn't that a good thing? :lol:
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Postby Lyon » Mon Apr 12, 2010 11:49 am

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Postby happydance » Mon Apr 12, 2010 11:58 am

At the end of the W5: Extended research clip Yves Savoie says "all of our competitions are open for CCSVI business". What exactly is he trying to say? Who does he mean by competitions?
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