Canadian Documentary ????!!!!

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

Postby Rickshaw » Mon Nov 23, 2009 4:05 am

hi im new..i live in toronto and just watched our ctv W5 special with my buddy (who also has MS) and while we were over joyed by the results, it also came with an anger at MS research for possibly being that far off the mark. iron build up VS an auto immune disease...disappointing. the last 20 years of useless research...funny how when you add love to research, you find things otherwise missed. thanks to dr zamboni and his people for giving me a light at the end of the tunnel...it wasnt there before and i feel like i may actually have a chance to walk my daughter down the isle one day.
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Postby Rickshaw » Mon Nov 23, 2009 4:28 am

and the stent procedure is $80,000 USD?
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Postby whyRwehere » Mon Nov 23, 2009 4:34 am

You should probably try to enrol in the Buffalo study since you have no insurance in the USA, just to get the testing done....then think about either going to Stanford (expensive though) or trying to get a vascular surgeon or interventional radiologist interested in Canada...or go to Poland to see Simka.
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Postby wonky1 » Mon Nov 23, 2009 4:44 am

Or... You could visit Dr Simka in Poland for 2-3 thousand Euro's.
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Postby jimmylegs » Mon Nov 23, 2009 5:44 am

um.. think the autoimmune theory still stands... zamboni is looking at vascular stuff as a possible trigger for the autoimmune reaction if i recall correctly? good job by W5 :)
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Postby bestadmom » Mon Nov 23, 2009 6:36 am

Some of the Canadians posted on Facebook yesterday that Buffalo is only accepting Americas into the study. But there are a few Canadian centers doing imaging under DR. Haacke's protocol. Go to his websire-
ms-mri.com to find them
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Postby Terber » Mon Nov 23, 2009 7:37 am

I talked to Michelle... Canadians are welcome in the study =)

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CTV News story

Postby jenf » Mon Nov 23, 2009 8:05 am

I have posted this story on every board, lists serve, and online group I belong to that relates to MS. I am SOOOO excited about this! I participated in the clinical trial in Buffalo on Friday (11/20), but didn't get any results because it's a blind study. I tried to get evaluated, but was informed that they cannot do this yet, which is why they are doing the clinical trial (if that makes any sense). In any event, this is fantastic news and I was so happy to see this news clip. It's amazing what can be accomplished when one is driven by love. Soooo cute!
Jen
RRMS - dx 06/09
LDN 4.5 mg - 06/09
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Postby ikulo » Mon Nov 23, 2009 8:09 am

jenf - will they give you your results once the study is finished?
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Postby jenf » Mon Nov 23, 2009 8:54 am

The only results they gave me was a copy of the MRI, which really tells me nothing. So, I still don't know for sure if I have this condition, but I don't need a test to confirm what I already know. I've always felt as though I've had a circulation issue... the CCSVI theory confirms that for me. But yes, it would have been nice to walk out of there knowing if I had the condition for SURE, but I was still happy to do my part to help further the research!!
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Postby bestadmom » Mon Nov 23, 2009 9:27 am

I'm happy to hear Canadians are welcome to participate in the research.
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Postby Ruthless67 » Mon Nov 23, 2009 11:00 am

jenf,

Please someone correct me if I'm wrong; but wasn't Dr. Haacke asking for people to send him copies of their MRI' for him to study?

E. Mark Haacke
Director of the The Magnetic Resonance Imaging Institute for Biomedical Research, Detroit (USA)
Inventor of the SWI system, i.e. the most sophisticated and advanced system for the diagnosis of multiple sclerosis

I found this info on "Big Names in CCSVI" sticky, but no contact info for him.

Lora
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Postby ozarkcanoer » Mon Nov 23, 2009 11:33 am

Lora... Go to Dr Haacke's website. Boy is HE overwhelmed !!


http://www.ms-mri.com/
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Postby Ruthless67 » Mon Nov 23, 2009 11:40 am

Is'nt this getting AMAZING!
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Postby bestadmom » Mon Nov 23, 2009 12:53 pm

Totally amazing!
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