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Re: Well said, eric593
Posted: Tue May 04, 2010 9:00 am
by Cece
Trish317 wrote:His condition has, recently, started to rapidly deteriorate.
Are you having any luck in finding someone to treat him? This is the sort of situation where, yeah, the risks of the procedure are really low compared to the risks of waiting.
Trish317 wrote:I'm doing some research on the powers and limitations of IRB's.
Let us know what you find out, I am curious too.
Posted: Tue May 04, 2010 9:01 am
by cheerleader
jackiejay wrote:is Freedman's stem cell research funded by MS society?....I think it is...and I wonder how much money he is getting for that?
4 million over 6 years
http://www.mssociety.ca/en/research/ste ... search.htm
Trish is right...this procedure is performed EVERY DAY on dialysis patients. Jugular stenosis is a known problem, there is a treatment protocol.
Happy Global CCSVI Day! Let's get off the internet and onto the streets!
link to events:
Liberation Day May 5
Thanks to Dr. Embry and our outspoken Canadian friends-
cheer
Re: Well said, eric593
Posted: Tue May 04, 2010 5:02 pm
by Trish317
Cece wrote:Trish317 wrote:His condition has, recently, started to rapidly deteriorate.
Are you having any luck in finding someone to treat him? This is the sort of situation where, yeah, the risks of the procedure are really low compared to the risks of waiting.
Trish317 wrote:I'm doing some research on the powers and limitations of IRB's.
Let us know what you find out, I am curious too.
We're researching every option. He has seen a new neurologist and she's given him a referral for an MRV. I've been in contact with several interventional radiologists who know about Dr. Zamboni's research and want to test and treat patients but they're in the IRB situation.
We live in two different states so we're researching and contacting doctors, hospitals, and universities in our states and all the states where we have family and friends.
My darling man resigned himself to the fate of his PPMS. I never did. Now he has hope. I will not allow it all to be snatched away from him.
Posted: Tue May 04, 2010 6:46 pm
by BELOU
eric593 wrote:At this early stage, with Zamboni developing his own scanning device for sale
I'm a little bit disapointed to ear this. But that doesn't tell if Zamboni did it to speed up the diagnostic to help MS patient or if it's only to fill up his wallet. Who knows? Does it make his theory less valid... no.
Marc
Posted: Tue May 04, 2010 7:41 pm
by jackiejay
it seems a lot of problems with CCSVI is the consistency of testing for it.....so it seems logical that the guy who started this whole thing would try to solve this and invent a device that could become the gold standard for testing....because now it seems there is not a lot of consistency with results.....which could be the tester or the testing device.....gives the skeptics lots of ammo....I personally don't think he is in it for the money.......he sees a need and wants to fix it......he fixed his wife's MS and got the ball rolling.....except the ball has sort of gone off course a bit and he has to put it back on track.........
Posted: Tue May 04, 2010 8:03 pm
by cheerleader
whoa...speculation desist. Esoate already has the transcranial doppler machine Dr. Zamboni has been using. Dr. Z is NOT making any money off this. The machine is already made:
http://www.esaote.com/modules/core/page ... N_VASCULAR
Please, fact checking before speculation-
The ball's not off the course. Venography is the gold standard test. 90-100% of pwMS have CCSVI when tested with venography, but it is invasive. Doppler or MRV are non-invasive ways to test, but they are NOT conclusive. Only venography is.
Trish, really hoping you can find a local IR interested in testing. Hang in there. Please keep us posted-
cheer
ok.
Posted: Wed May 05, 2010 5:03 am
by BELOU
Cheerleader,
Thank you for the clarification about the new scanning machine.
Marc