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i would really like to kinda make a proposition to some of the big name neuro.'s especially neuro. surgeons who really i wish they would get on board because bottom line i feel that to solve this miserable ms puzzle we will need "a village". but here goes-it is really easy for some of the neuro.'s to verbally say ccsvi has no merit or ccsvi in no way helps ms or it's hogwash. now there are some very good top of the line doctors working on ccsvi and have come up with some pretty good evidence that ccsvi does have an involvement with ms and are treating people with some success. not a perfect score yet but impressive.

i would like to see the neuro.'s really working hard to scientifically prove there is absolutely no connection between ms and ccsvi. i wish they would start burning the midnight oil to scientifically prove it will not help ms. they should be testing and treating ms patients. looking at every vein and artery under a microscope following the patients just so they can "prove it wrong". not just say it's wrong.

the dr.'s who believe in ccsvi are being made to jump through the hoops when they make a statement. they seem to have to continually prove theirself (which is ok) they are working to continually learn more and improve outcomes. they, i feel really want to help us. they are working hard to be right and get it right and say it's right..

in my life i found at times when i was out to prove someone or something wrong i worked really hard at it because god i hated to be wrong. i just knew i was right but i had to prove them wrong. and in doing so i had to check out a lot of stuff. i had to "prove" them wrong. guess what i sat out to prove them wrong and it actually proved them right in one instance - had to eat crow- proving wrong verses proving right actually ended up creating and solving and it had a happier ending--because i just had to "prove" them wrong.

so, yeah, i want the nay sayers to step up-work real hard honestly, no back stabbing, no sneaky stuff, no shaddy paper work, no getting in bed with the ones who stand to loose if ccsvi can't be proven wrong, just do everything they can to "prove" it wrong. just so it's all above board, no shaddy stuff.

it's easy to say something is right or wrong. proveing it can hard. my money is on ccsvi being a big part of ms. the challenge is "prove" it wrong. in trying to prove ccsvi wrong i feel it will prove it right and with a lot more options and all kinds of good stuff. and hey, it's not bad to have to eat crow as long as the outcome is for a greater good. hope there some takers. i'm sick and tired of being sickand tired.

interesting thought, shift the burdon of proof.

blossom,

This idea is brilliant!

Make the naysayers put up or shut up.

Love it.

Best wishes,
~Pam

Blossom,

I completely agree, the MS neurological community should be working just as hard or harder to proove or disproove the theory. Instead we (pwMS) and the vascular community are doing their work. It doesn't seem fair, but most things that take effort are usually worth it. As a male that is married, I have eaten crow plenty of times. It is starting to taste like chicken.

I am convinced that when enough of us have spent our money on travel and out of pocket expenses this will be prooven or we will be eating crow. I don't think that I will be eating crow this time. I don't know if I will see the remarkable changes some have seen, but the correlation is too much to ignore. I don't part with money very easily and I leave for NY in 24 days (not that I am counting)

It would be nice if we had some help from the MS establishment, they are the ones that will really be hurt by this. It seems that they are being very shortsighted by their actions.

Jim

jcb, wish you the best with albany. we are all gonna be different but i hope soon they can figure out a way everybody improves and stays improved. instead of the ms society pussy footing around and only recognizing what basically we have forced them to they should be on these neuro.'s like white on rice to "prove" ccsvi wrong-or are they afraid too that by trying to get actual science to prove ccsvi wrong it may help prove it right. the ms society kinda reminds me of my x husband-full of excuses-full of himself-a very gifted liar takes betrayal lightly and it's all about the money. of course the ms society has done some good so did the x but when we really need them and it might really hurt the cash flow-it seems to be a different ballgame.

I am proposing a theory that MS is caused by aliens undetectable by current scientific instruments. Until it is disproved I expect full support and funding from all governments and MS organizations.

rainer wrote:I am proposing a theory that MS is caused by aliens undetectable by current scientific instruments. Until it is disproved I expect full support and funding from all governments and MS organizations.

Any scientific studies peer-reviewed and published in the Journal of Vascular Surgey to support this theory? ;)

Aren't neurologists supposed to be the smart ones???

Drury

Drury wrote:Aren't neurologists supposed to be the smart ones???

rainer wrote:I am proposing a theory that MS is caused by aliens undetectable by current scientific instruments. Until it is disproved I expect full support and funding from all governments and MS organizations.

erinc14,

That was really funny!

Drury

blossom wrote:i would really like to kinda make a proposition to some of the big name neuro.'s especially neuro. surgeons who really i wish they would get on board because bottom line i feel that to solve this miserable ms puzzle we will need "a village". but here goes-it is really easy for some of the neuro.'s to verbally say ccsvi has no merit or ccsvi in no way helps ms or it's hogwash. now there are some very good top of the line doctors working on ccsvi and have come up with some pretty good evidence that ccsvi does have an involvement with ms and are treating people with some success. not a perfect score yet but impressive.

i would like to see the neuro.'s really working hard to scientifically prove there is absolutely no connection between ms and ccsvi. i wish they would start burning the midnight oil to scientifically prove it will not help ms. they should be testing and treating ms patients. looking at every vein and artery under a microscope following the patients just so they can "prove it wrong". not just say it's wrong.

the dr.'s who believe in ccsvi are being made to jump through the hoops when they make a statement. they seem to have to continually prove theirself (which is ok) they are working to continually learn more and improve outcomes. they, i feel really want to help us. they are working hard to be right and get it right and say it's right..

in my life i found at times when i was out to prove someone or something wrong i worked really hard at it because god i hated to be wrong. i just knew i was right but i had to prove them wrong. and in doing so i had to check out a lot of stuff. i had to "prove" them wrong. guess what i sat out to prove them wrong and it actually proved them right in one instance - had to eat crow- proving wrong verses proving right actually ended up creating and solving and it had a happier ending--because i just had to "prove" them wrong.

so, yeah, i want the nay sayers to step up-work real hard honestly, no back stabbing, no sneaky stuff, no shaddy paper work, no getting in bed with the ones who stand to loose if ccsvi can't be proven wrong, just do everything they can to "prove" it wrong. just so it's all above board, no shaddy stuff.

it's easy to say something is right or wrong. proveing it can hard. my money is on ccsvi being a big part of ms. the challenge is "prove" it wrong. in trying to prove ccsvi wrong i feel it will prove it right and with a lot more options and all kinds of good stuff. and hey, it's not bad to have to eat crow as long as the outcome is for a greater good. hope there some takers. i'm sick and tired of being sickand tired.

Maybe if Zamboni ever releases his ultrasound protocol they would have a place to start?

scorpion wrote:Maybe if Zamboni ever releases his ultrasound protocol they would have a place to start?

Here is what Dr. Sclafani shared with us back in June, after consulting in Italy:

drsclafani wrote:

simone wrote:

drsclafani wrote:That ultrasound is quite specific. The Doppler is quite relevant and the images need to be taken in just the right way, otherwise the diagnosis is unclear.


So it is clear that we need to create a standard. that standard needs to be specific, reproducible and simple.


by the time i learn this one, paolo may have perfected a US test that is easier to do with similar reliability.

Is anyone in the US or anywhere doing that?

no, he is really trying to validate it. He is not ready to publish

What are your thoughts on how to create a standard? [ If you don't mind]

a standard should be evidence based, practical and reproducible. It should be inclusive but with high expectations. It should be reviewable, and available. It should be by consensus.

ps did i hear dr Z say they are going to do a blinded study of sort? ( brain fog is getting worse)

yes

It is easy to say he should publish, but it is not easy to establish an evidence-based, practical and very importantly reproducible, also reviewable, by-consensus standard or protocol.

Also if you go back to his papers, he does include in great detail how the doppler ultrasound was performed. So I am not sure what beyond that is needed...but I do know that Dr. Sclafani's ultrasonographer was not able to find any results in the nearly 20 patients that Dr. Sclafani, upon venography, found much wrong with, so even following how to do as described in the published research by Zamboni, it wasn't until he went to Italy that he was successful with the ultrasound. So I think: it's not as easy as it sounds, that Dr. Zamboni should just publish it. He should not, until he's managed to get it so that someone without specific ccsvi experience can pick up the page and perform it by reading it. Reproducible, in other words.

Dr. Jacobs at Atlanta Clinic assured me today that his tech is fully trained in the Zamboni protocol. Now I'm wondering what that means.

Dr. Jacobs at Atlanta Clinic assured me today that his tech is fully trained in the Zamboni protocol. Now I'm wondering what that means.