Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

chrishasms · Post by **chrishasms** » Sun May 03, 2009 5:33 pm

BTW Sharon, your killing me!! lol I finally have real reason to go to CA, and had my wife talked into a nice dinner at the warf, and I may have you find someone local lol.

I'm still going to Cali...I've never been and San Fran seems like a good place to see on a mini vacation. It's a drive but who cares?

patientx · Post by **patientx** » Mon May 04, 2009 5:38 am

chrishasms wrote:I will tell you I told Dr. Kerr about stents being used to open up blood vessels to stop the BBB breach maybe so he knows what I'm doing and he could care less because he would have definitely told me.

Hey Chris,

I'm curious - did Dr. Kerr offer an opinion on this vascular theory/research of MS? I know Marc showed Dr. Calibresi Zamboni's papers, and he didn't think too much of them.

chrishasms · Post by **chrishasms** » Mon May 04, 2009 6:01 am

No he just told me to go for it. I will tell you this for sure - If this proved to be the real issue I think he would be happy as all get out. I remember at one appointment he made a remark something to the effect, "If orange juice would cure MS I would RX everyone OJ." I think thats how he put it. It's been close to a year now.

I think he will be more interested when I send my results back to him.

He's not the normal neuro. He's very open minded and really wants end this mess of a disease.

peekaboo · Post by **peekaboo** » Mon May 04, 2009 6:32 am

When i get back from my experience in Stanford I will flood the AZ MD both neuro and vascular markets...small town prescott will not be enough!

mrhodes40 · Post by **mrhodes40** » Mon May 04, 2009 6:39 am

PKboo and Sharon, good job on the hunt for new docs! Wouldn't it be great if there were a hundred or more at Dr Z's conference next September? Grass roots let's go!

Sharon said

thanks to the tenacity of Marie and Cheer

Thanks for thinking of me! I have spent long years in the "MS is not autoimmune" wilderness finding the lure of the research supporting that idea to be credible and important. Occassionally we've had TIMS members going there also, but by and large, I have felt fairly unappreciated for holding that POV. I have been told to add LOL to all my posts, or that the researchers working in this area should "wash the shoes" of the autoimmune guys.

I own copies of many papers offering evaluation of the autoimmune model and showing it to have serious, fatal flaws, but there has never been a credible non autoimmune cause of MS discovered-until now.

It has been tremendously fun for someone like me to finally have a model that matches the bias I have come to hold through studying this literature about MS causation-that the nerves are being damaged and the immune system comes in after the fact to clean it up- and have the early work show 100% concordance between the stenoses that are hypothesized to cause the MS lesion and MS diagnosed people.

I believe that MS is CCSVI, though there is more to understand and for a while there will be some back and forth. I believe that in the end however, it will prove out to be the cause of MS.

One of my biggest hero's in the literature world is John Prineas. Dr Prineas is a Dystel Prize (MS award)winning pathologist. He was honored for lifetime achievement in MS research this year.
from HERE

The 2009 winner of the Multiple Sclerosis International Federation’s (MSIF) prestigious biennial Charcot Award for a lifetime achievement in research into the understanding or treatment of multiple sclerosis (MS), is Professor John Prineas.
---snip---Prof Prineas’ research career has spanned more than 40 years and his work on myelin destruction has been a central theme
--snip--returned to his native Australia where he is now Professor of Neurology at the Institute of Clinical neurosciences, University of Sydney. Since then he has remained active in research of the pathology of the early lesion in MS.
---snip---
“Professor Prineas published a landmark paper in 1979 providing EM evidence that repair to myelin can occur in MS plaques and in 1993 he further demonstrated that remyelination can occur normally within the central nervous system. Subsequently, Professor Prineas demonstrated the ability of oligodendrocytes to regenerate in MS. This work has opened up new therapeutic avenues for exploration. He is also a senior advisor on the ‘MS lesion project’.

More recently, Professor Prineas with Dr Barnett has published a study (Annals of Neurology 2004) describing oligodendrocyte apoptosis occurring in MS lesions prior to any evidence of inflammation. This has not only expanded the knowledge of the underlying pathology of MS but challenged more traditionally held concepts of the development of the MS lesion.

He is both a treasured resource and an inspiration to all involved in the investigation of MS.”

It is incredibly important that a man of this career achievement and whose well respected work gives us most of our understanding of what an MS lesion is like has now converted to believing MS is NOT autoimmune.

And he is a senior advisor to the MS Lesion project too! He is central to MS research; not some outlier.

The conversion of a researcher of this stature to the non autoimmne model can't be overstated in its importance. It is patently absurd to say that this researcher should somehow take a lesson from others and get back in line: he is the very pinnacle in this field and most of what those other guys know comes from Dr Prineas's lab. I am in good company using his point of view as my model.

Dr Zamboni and his team, Dr Simka and now Dr Dake are the newest members of my personal list of MS research heroes. those of us in the non autoimmune camp get to enjoy the development of this model--though it will likely be considered as co fator to autoimmunity as a necessity for a while until all the work is done and everything is understood.

I am unbelievably thankful we are finally at a place where we are considering a credible model for MS causation that is in a new direction.

Now we may actually get somewhere....

thx for listening.

nani · Post by **nani** » Wed May 13, 2009 2:11 pm

Thanks for all the info here. Lots to sort through. I came across an article on some research done by Magee Womens Research Institue. It talked about the pregnancy hormone relaxin. It is procuced in the ovaries- sorry guys- and increases as the pregnancy continues. It is responible for improved blood flow during pregnancy. It was even sucessful as a vasodilator in male rats. Seems to fit with Zamboni's research. And the whole pregnancy remission data. I'm definitely taking a stack of questions to my neuro. I can't add the link to the article but if you look uo Magee Women's institute etc. you'll fink it.[/url]

cheerleader · Post by **cheerleader** » Wed May 13, 2009 2:24 pm

nani wrote:Thanks for all the info here. Lots to sort through. I came across an article on some research done by Magee Womens Research Institue. It talked about the pregnancy hormone relaxin. It is procuced in the ovaries- sorry guys- and increases as the pregnancy continues. It is responible for improved blood flow during pregnancy. It was even sucessful as a vasodilator in male rats. Seems to fit with Zamboni's research. And the whole pregnancy remission data. I'm definitely taking a stack of questions to my neuro. I can't add the link to the article but if you look uo Magee Women's institute etc. you'll fink it.[/url]

Welcome, Nani!
Thanks for the info on relaxin and it's affect on the endothelial lining of blood vessels and nitric oxide, you're right, it certainly fits with the increased circulatory/bloodflow paradigm and why women find remission from MS during pregnancy.

The hormone relaxin (RLX), which can be detected in human venous cord blood, has been shown to be a potent vasodilator, acting through increased expression of inducible nitric oxide synthase (NOS II) and nitric oxide (NO) generation.

http://www.ncbi.nlm.nih.gov/pubmed/15026539

Be forewarned about bringing this to your neuro....most are not open to any other paradigm than autoimmune. But if you have a curious, open-minded and secure neuro, they may welcome the new information and enjoy an exploratory discussion with you! Good luck, and thanks for the info! Here's the study you mentioned...
http://endo.endojournals.org/cgi/conten ... 145/7/3289
cheer

Lars · Post by **Lars** » Thu May 14, 2009 9:55 am

In stumbling around the clinical trial site I found this. How relevant might this be to this thread?
http://clinicaltrials.gov/ct2/show/NCT0 ... en&rank=31
Lars

peekaboo · Post by **peekaboo** » Thu May 14, 2009 10:03 am

Hi Lars -

Well it gives me an idea of what kind of stents might be used for my therapy in early june

Good lead or bostonites for contact info

peekaboo · Post by **peekaboo** » Thu May 14, 2009 2:01 pm

found another paper mentions zamboni's chronic paper

The unsolved puzzle of multiple sclerosis and venous function
Claude Franceschi

http://jnnp.bmj.com/cgi/content/extract/80/4/358

mrhodes40 · Post by **mrhodes40** » Thu May 14, 2009 2:06 pm

Lars you mention a clinical trial that brings up a good point, these things are done relatively often but they are not trouble free completely and people do need to get the picture of what is involved by asking good questions etc. Some people may want to consider what they learn after assessment and do surgery later after they'e had time to think about what they learned.

That having been said, I'm interested in opening up any plugged veins even if the techonology is not perfectly 100% trouble free and requires monitoring and potential replacement in the future. I'm all in; no holds barred personally, and that is because comparing my options and the different risks, I find I like this profile better than what else is available to me when I compare risk vs rewards. I am SPMS and an EDSS 6 so I really have no other options to speak of, so in my case I compare nothing and certain decline (considering the last few years--fast losses too) to some risk and a chance at stopping this. In my situation this is a no brainer.

I agree that the persons running that trial and other stent trials like that may be a good resource for approaching with this information.

cheerleader · Post by **cheerleader** » Fri May 15, 2009 5:59 am

The fact that Dr. Dake is one of the leading investigators, inventors and researchers in stent design and efficacy is what finally convinced us. He has been at the forefront of this medical intervention since the early '90s. As this medical procedure evolves, I know that Dr. Dake will continue to lead the way at Stanford.

But Lars and Marie bring up an important point-nothing is risk free. Jeff living without jugular drainage was a continued risk we couldn't take. As "stable" as he was on supplements, diet and exercise- his brain and spine were still suffering from slowed perfusion and reflux (I believe this is what we will eventually see makes MS progressive- continued, unrelenting blockage) Now, with the stents in place (and he has three! two telescoping on the left, one on the right) he can heal.

The risk vs. benefit of stent placement will need to be evaluated by every MS patient. Maybe some will be able to wait, receive a cleanup, keep up their healthy lifestyles and be fine. Jeff needed help-
cheer

cheerleader · Post by **cheerleader** » Mon May 25, 2009 1:56 pm

BUMP!

Anyone new to CCSVI needs to read this thread...

do not be alarmed by the length, it's actually quick reading.
(and somewhat entertaining!)
You can see how this whole thing revealed itself to us at TIMS, starting with the Zamboni research.
Lots of great discussions, explanations, and further links.
It's only been since December, so this is a new idea.
Just imagine where we'll be in six more months!
cheer

mrhodes40 · Post by **mrhodes40** » Mon May 25, 2009 4:50 pm

It's only been since December, so this is a new idea.
Just imagine where we'll be in six more months!

Right on Cheer!!!
marie

Loobie · Post by **Loobie** » Tue May 26, 2009 2:21 am

I'm imagining where I'll be in 6 weeks! I'm not liking how the warm weather is treating me this year. Here's to hope!

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Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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