This Is MS Multiple Sclerosis Community: Knowledge & Support

Remember reading last year that Dr. Zamboni found that over 90% of young children (he treated through adulthood) with a particular vascular issue ended up with MS 20 years later.

The origin of Dr. Zamboni’s work in Multiple Sclerosis began when he was a vascular surgeon in Sardinia, Italy. Sardinia is noted for its high level of epidemiology in MS in the general population. During 1987-1992, he noted a high prevalence in children with malformations of the jugular veins. His paper on this topic, “So-Called Primary Venous Aneurysms” was published in 1990. He noted AV fistula and a closed ring stenosis that could not be crossed by their blood in these children, external compression and this vascular anomaly appeared to be congenital. 20 years later, 90% of these children he studied have been diagnosed with MS.

Dr. Patricia Coyle of Stony Brook University asks a question-
“How do we diagnose CCSVI?” The first answer comes from Dr. Zivadinov-
Doppler investigation is the beginning. If there is non-direction of flow in any body condition, or continual flow in the opposite direction- CCSVI is implicated. Transcranial doppler in the deep cerebral veins shows reflux. And then it is necessary to locate the stenosis. In MS, the jugular/Vertebral veins flow is consistently subverted. Dr. Zivadinov states that they had tested a 25 year old girl who had come into Jacobs as a control. A healthy girl, who presented with bilateral jugular occlusion. Months later, she had her first CIS attack of MS, and an MRI was done to show two lesions. She also has a familial history of MS. He reiterated that all of the doppler testing was blinded, yet it corraborated CCSVI in MS 100%.

Dr. Dake then stated that he had also tested a relative of a confirmed MS patient. A woman who had not been diagnosed with MS, but who presented at Stanford with jugular occlusion and a variety of neurological deficits, yet no MS diagnosis. She also showed lesion activity on an MRI, and he stented he occlusion the day before he flew to Bologna.

That seems to be the thinking of some Gordon, and I actually don't disagree with it ... so, if you get your veins fixed when you're young, you could ward off future complications due to them ...

I disagree that CCSVI isn't being found in young people or people with newly diagnosed MS.

I've provided laundry lists of that, I think you could find more and more people on Facebook with just that every day.

The problem is (and problem might not be the right word) ... but so far only about 5,000 people probably have ever been TESTED for (let alone treated) for CCSVI. Given the spread of ages of MS involved, and that few people, it means a lot of young people probably still haven't been tested to prove it or not. So the data isn't good scientifically ... but from the personal stories segment, you can see a lot of young people have CCSVI (some pretty bad) ... and I think as this goes along, you'll see CCSVI in more and more ... and then we can debate causality (or their relation to MS) ...

But - secondly - are you willing to know you have twisted or bad veins, and then NOT get them fixed just for science to watch over 20 years to see if they get worse, and as a result your MS gets worse? I certainly wouldn't be. I don't think anyone would ... that's a terrible thought.

You lost me. Are you saying 5,000 people is not enough people to confirm or deny CCSVI or causation? So the data is not good scientifically why? The good thing for you is that you don't have MS so you will not have to wait for anything.