ccsvi tracking website

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

ccsvi tracking website

Postby Cece » Sun Aug 22, 2010 11:52 pm

Anyone know anything about this site? Or want to add your data to it? I'd be interested in seeing the "aggregated graphs" once they are available.

http://www.ccsvi-tracking.com/index.php
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Postby CureIous » Mon Aug 23, 2010 12:10 am

Oh great, yet another internet site by an anonymous source that wants all of our information inputted. Do we have any idea who started this site?
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Frank » Mon Aug 23, 2010 9:47 am

The improvement found after treating CCSVI in patients who also suffered from multiple sclerosis led Fondazione Hilarescere to establish an international cooperation with the BNAC of the Marc Jacobs Neurological Institute, New York State University and to promote the dissemination of all these discoveries in the national and international scientific community (Cenaculum Studiorum, Bologna, 8 September 2009). In line with the meaning of the word hilarescere(in Latin: make cheerful, joyful), all the experts involved in these efforts intend to bring back a smile on the face of those who suffer from diseases for which there is no clear explanation or treatment, yet.


I think the site was initiated by:
http://www.fondazionehilarescere.org/eng/

as "stated" here:
http://www.ccsvi-tracking.com/_CCSVI.php

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby CureIous » Mon Aug 23, 2010 10:26 am

Thanks, I wish they would make it a little easier to find that BEFORE signing up. Some of us long time net'ers are a bit wary of insta-input.

M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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