This Is MS Multiple Sclerosis Community: Knowledge & Support

I am disappointed with some of the answers, but here it is:

http://www.mastersofms.com/masters_qas.php

~Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

what are you disappointed with?

ZIVADINOV - "A study in California was halted because of deaths in patients whose jugular veins were opened with stents..."

Does he have his facts straight here? Deaths plural? Due to stents? Shouldn't he clarify?

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

"It could be that an abnormality of the blood vessels triggers an immune response leading to the inflammation and myelin degradation seen in MS, possibly related to deposits of iron in the brain." ???? this statement is confusing.. it sounds like he's saying if the vein is crooked your immune system kicks in.. oh and maybe it has something to do with iron deposits.. he does not connect the two..no mention of reflux???

"Vascular abnormalities in patients with MS are not a new concept—they were first identified in the 1800s and have been described since the 1930s."... no mention of the fact that up until now imaging technology did not allow proper identification of these abnormalities.

"Nor are venous insufficiencies specific to MS. Our studies have found CCSVI in about 25% of normal individuals and about 40% of those with neurologic diseases"... no mention that the 'normal' group included blood relatives of MSer's.

"Selective venography is the gold standard for CCSVI diagnosis but is currently not appropriate for screening purposes because of the invasive aspects, costs, and risks associated with this procedure. " Risks!! COSTS!! I come from a fit and active family who unfortunately suffer heart and circulatory issues... MANY having recieved angiograms and agioplasty..should we run for the exits??

and this!!.. "A study in California was halted because of deaths in patients whose jugular veins were opened with stents" ...sigh..

lol...you guys picked up a few more than I did!

ikulo -- I'll go with AlmostClever and PCakes!

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

edit

I returned from BNAC yesterday. Dr. Guttman and Dr. Zivandinov are working very hard on the Venous theory. There are so many issues they do not know. I have no doubt that they want CCSVI as a treatment for MS. The whole world is watching BNAC and waiting for results. They are trying to perfect a diagnosis capability that is non-invasive. That in itself is a difficult challenge.

I have complete confidence in BNAC and Jacobs. These people are human and are overwhelmed with people all over the world contacting them, including doctors. They may make mistakes from time to time or their comments may be taken out of context.

They are still not sure of many aspects of CCSVI, but they have no doubt it plays a role in MS.

Even Doctor Zamboni himself has said, he does not know which comes first MS or CCSVI. They are all doing research trying to help people with research.

Give them a break.

I think that you are making too much of Dr. Z.'s words. If the transcript is accurate and was taken from a recording of an interview it's easy to have a slip of the tongue and say 'deaths' when he meant to say 'death'. Even if he was writing responses to the questions, people make errors even when they know the facts.

Dr. Zivadinov, as mohzi wrote, is dedicated to doing the research that will further everyone's knowledge about the prevalence of CCSVI and its effective treatment. There's so much that isn't known. Help the process by donating to BNAC and to other researchers, and by spreading the information as it is published.

I mean no disrespect to Dr Zivadinov.. but quite the contrary to those who continue to report anything other than facts and who manipulate the words and misfortunes of others to suit their own agenda and sensationalistic needs.. .

"...either immediately or following a 6-month delay".

Please...could anyone explain the meaning of this sentence to me?

Thank you in advance.
Pepe.

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María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.