Response from Canadian MS Society Re: CCSVI

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

Postby ErikaSlovakia » Sun Nov 22, 2009 12:07 pm

whyRwehere wrote:Oh, puleeez. He is saying, we know nothing ourselves, but just keep waiting...there could be a risk in testing from the dye (yah, what about the gadolinium for MRIs...that doesn't seem to bother them). And where is the proof going to come from if people don't act?

I did not get any dye during MR in Poland only during the procedure.
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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby whyRwehere » Sun Nov 22, 2009 12:13 pm

And if someone only gets a doppler (by someone who knows what they are doing), then there is zero risk in the test.
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Postby robbie » Sun Nov 22, 2009 12:50 pm

When asked about what ms patients should ask their doctors about this Mr O'coner says we should all just wait and see how it pans out. Fine for him to say but most of us don't have years to wait.To me he looks like he knows this is it and he realizes how wrong him and his buddies are.On the show last night Dr Zamboni looked like someone who was honest and not showing dollar signs in his eyes.I really hope the big dicks with all the money don't find a way to shut him down before this has a chance.
Had ms for over 19 years now.
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Postby Ruthless67 » Sun Nov 22, 2009 12:53 pm

I agree with mrhodes. Dr O'Conner's body language and face perked up at the mention of drugs, both the current drugs in use and new ones on the way.
And I’m not surprised either at the Canadian & American MS Societies responses. It’s called restraint and covering their ass. They have to be cautious, and I can understand that. CCSVI is new, we have more work to be done, more Liberation Procedures to do, more research & trials.
I will do my part, if I can get the tests and if I have stenosis in my veins. I’ll pay and have the procedure and monitor my post-op.
I feel Dr. Dake and Stanford where smart to take a backseat at the moment. I think we need to hear from the nay-sayer’s so we know where the weak spots are in our presentations and research. After all, in the MS treatment/research department CCSVI is in it’s infancy.
But I don’t get me wrong, I don’t want any grass to grow either between now and PROVING without a doubt that Dr. Zamboni is correct!
We can’t forget what a Money Making disease this is for many aspects of the medical/pharmaceutical communities. Here is an article skewed to folks that want to make money off our disease. And in today’s economy, no one wants to loose their “cash cow”!

Examine The Global Multiple Sclerosis Market 2009-2024
http://www.pr-inside.com/examine-the-gl ... 213395.htm

Some excerpts to get your blood boiling and your face red!

"The prevalence and onset of MS in children and adults is expected to rise steadily. Global sales for MS therapies will rise accordingly, due to epidemiological, healthcare and commercial drivers.

This report answers those important questions and others, such as how the established MS products will fare competitively in the years ahead. Which will remain the most profitable and how will they be affected by new competition.

The Global Multiple Sclerosis Market 2009-2024 commercially analyses both leading and emergent treatments, with key companies and products discussed comprehensively. In particular, we discuss prospects for the following MS drugs: - Tysabri - Avonex - Copaxone - Betaferon - Rebif.

Predicted revenues, growth rates and other key metrics for the global MS drugs market from 2009 to 2024 Predicted revenues, growth rates and other key metrics for leading MS drugs worldwide from 2009 to 2024 Predicted revenues, growth rates and other key metrics for MS drug sales in leading nations from 2009 to 2024

Visiongain predicts that total revenues in the MS market will increase steadily throughout the forecast period, 2009 to 2024, with the most substantial growth occurring during a crucial period in the future."


Well, I beg to differ with them if CCSVI gets off the ground. They’ll be building their castles and empires in the sand!!!!!

As some of our Aussie posters might say: "That would make my day, mate!"
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Postby bibliotekaren » Sun Nov 22, 2009 1:51 pm

Interesting link Ruthless -- quite revealing.

Yeah, O'Connor sure did perk up about the pipeline. You know he had to be dreading that whole interview and the carefully crafted line that he had to follow. He may have perked up at that point just because it's a safer topic. It seems that not too many societies and researchers are positioned well to support it until a critical mass is reached. There's too much at stake.

Thank for the link.

Donna
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Postby MrSuccess » Sun Nov 22, 2009 2:03 pm

Dr. O'Connor states up front ... I am excited but cautious.

I have watched this feature twice . Dr. O'Connor seems very calm and does not react strongly to the mention of MS drugs. He appears much as our Dr. Zamboni has. Calm and respectful . And very much optimistic about Dr. Zamboni's Big Idea.

Am I missing something ?


It looks like Dr. O'Conner is looking forward to seeing more CCSVI tests and trial results as are we .

Tuesday can't come quick enough ! :D

It's all good.




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Postby vendredi5h » Sun Nov 22, 2009 2:07 pm

ozarkcanoer wrote:I have already emailed my local NMSS chapter and told them that I would NOT sponsor a walk this year unless they pay some more serious attention to CCSVI. This is a boycott of the walk.

I just put some pressure too on MS Canada. Here are the links for different contries if anybody wants to send comments.

Canada: info@mssociety.ca
US: http://www.nationalmssociety.org/ContactUs.aspx
UK: http://www.mssociety.org.uk/contact/general_info.html
Autralia: http://www.msaustralia.org.au/contact.asp
NZ: http://www.msnz.org.nz/utilities/question/

Yannick
Last edited by vendredi5h on Sun Nov 22, 2009 4:17 pm, edited 1 time in total.
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Postby ozarkcanoer » Sun Nov 22, 2009 3:26 pm

MrSuccess,

We may very well be overreacting to what people are saying. It is the human condition. If we didn't overreact we wouldn't have so many wars. We are all so excited by Dr Zamboni and CCSVI that we want everybody to embrace it immediately. I guess we should just soldier on and do our best for this very promising CCSVI hypothesis. In the internet age scientific battles like this aren't kept behind academic doors and the patients who are suffering from these diseases have a greater voice. There are a lot of smart people here. I am overwhelmed by that fact alone. CCSVI makes sense to me. As a person with MS, I want to be involved in this.

We should be so grateful that the people who have had the good fortune to have the Liberation Treatment are still fighting alongside of those of us who haven't. Thanks for cheer !!!!

ozark
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Postby flipflopper » Sun Nov 22, 2009 4:15 pm

Thanks Dignan!

Dr O'connor was more optimistic than my neurologist when I saw him last Monday. When I briefly asked for his opinion on CCSVI, he told me that he and Dr Freeman had met Dr Zamboni. He said that they both looked at each other strangely when Dr. Zamboni was explaining his research. My neurologist mentioned that he thought Dr. Zamboni was an extremely intelligent and honest guy. But, he is not too sure about CCSVI. He told me that he doesn't understand how a congenital problem would suddenly one day give you symptoms and cause problems (and why you were fine before). I argued a minute or two but I had other things to discus with him so I had stop the discussion.
.
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Postby mrhodes40 » Sun Nov 22, 2009 4:32 pm

Maybe they just need to get used to it. Maybe it is just a matter of letting them hear of it think it over and eventually dig in and make it their own information. Let's hope. :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Sun Nov 22, 2009 4:43 pm

flipflopper wrote: He told me that he doesn't understand how a congenital problem would suddenly one day give you symptoms and cause problems (and why you were fine before). I argued a minute or two but I had other things to discus with him so I had stop the discussion.
.


Because it takes a lifetime of slow reflux to deposit enough iron in the brain to cause damage that can be seen. This is why MS is "progressive." Jeff lost his peripheral vision at 12, had depression at 30, fatigue at 45. God only know where he'd be at 55, but he didn't want to wait to find out. MS doesn't happen overnight (although in PPMS, it appears the progression is on a fast track)

Marie's right...they're going to have to get used to it. And neurology is going to have to acknowledge that there is a body connected to the brain.
Thanks for posting, dignan.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Sun Nov 22, 2009 4:55 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 12:50 pm, edited 1 time in total.
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Postby daniel » Sun Nov 22, 2009 4:56 pm

vendredi5h wrote:
ozarkcanoer wrote:I have already emailed my local NMSS chapter and told them that I would NOT sponsor a walk this year unless they pay some more serious attention to CCSVI. This is a boycott of the walk.

I just put some pressure too on MS Canada. Here are the links for different contries if anybody wants to send comments.

Canada: info@mssociety.ca
US: http://www.nationalmssociety.org/ContactUs.aspx
UK: http://www.mssociety.org.uk/contact/general_info.html
Autralia: http://www.msaustralia.org.au/contact.asp
NZ: http://www.msnz.org.nz/utilities/question/

Yannick


looks like pressure is getting to them, check out their homepage http://www.mssociety.ca/en/default.htm
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Postby radeck » Sun Nov 22, 2009 5:03 pm

flipflopper, I agree with cheers line of thought but have this one additional thought: If the stenosis are there from the time they develop at birth or during an infection in adolescence, that should lead to SOME noticeable effect, even if the absence of MS symptoms stemming from specific areas of the brain/spine like the ones cheer mentions. An obvious sign of lack of oxygen is fatigue. Wouldn't a person with stenosis have fatigue problems from the time the stenosis is there?

On the other side jugulars only really matter while we're laying flat, i.e. while we're sleeping. So maybe that's why we don't notice the blockage before the blood-brain barrier is actually hurt and the whole iron-deposition/inflammation/etc cascade starts?

I guess the question is, what causes fatigue?
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Postby Rokkit » Sun Nov 22, 2009 5:04 pm

daniel wrote:looks like pressure is getting to them, check out their homepage http://www.mssociety.ca/en/default.htm

I'm glad you posted that, because then I noticed their mission statement on their homepage:

"To be a leader in finding a cure for multiple sclerosis and enabling people
affected by MS to enhance their quality of life."

Ok, we're ready. Show us how you lead.
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