CCSVI - removed from a website...

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

CCSVI - removed from a website...

Postby cheerleader » Thu Jul 16, 2009 6:01 pm

Here's an example of why This Is Ms is such a special place. Someone trying to post about looking into CCSVI and being tested in Albany has their links removed from the post:


Read the abstract (copied below) and full study (link below) published
in the prestigious Journal of Neurology, Neurosurgery and Psychiatry
(JNNP):

*Copy and Paste of copyrighted material, from other Website, removed by hb-mod, moderator *

Then visit the * link to commercial website and related info removed by hb-mod, moderator *

I start my testing on Friday (Albany, NY) and will update my CCSVI
adventure here if there is any interest -- let me know. The recovery
averages two months and can be painful (controlled with narcotics),
but I do believe this is my only hope... I am disabled enough to
warrant the risk but not too disabled to handle the recovery, which
makes me a perfect candidate.

Studies and testing/surgeries are now starting in hospitals and
universities all across the US, but the testing/surgery began with Dr.
Dake at Stanford (yes, Stanford!).

Again, for full info, visit * link to commercial website and related info removed by hb-mod, moderator *

I am knowledgeable about CCSVI and can answer questions.

~Beachcomber
Last edited by hb-mod; 07-07-2009 at 03:18 PM. Reason: Please do not copy and paste, or post links to commercial sites, per Posting Policy. Thanks


This is from the "Health Message Boards" of WebMD.

Beachcomber...if you read this, feel free to post here! We'd love to hear your story!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Thu Jul 16, 2009 6:22 pm

gees this is sad :(
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Postby patientx » Thu Jul 16, 2009 6:22 pm

The really sad thing, is that on many of these other sites, you can't even point people toward TIMS. If you link another site, the post will get edited or deleted. It's almost like being in China.
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Postby bestadmom » Thu Jul 16, 2009 7:33 pm

I posted yesterday in the msworld.org forum about TIMS and this CCSVI thread but skirted it by not putting the url but spelling it all out in seperate words plus dot com spelled out. I was shocked, the mod approved it.
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Postby zap » Thu Jul 16, 2009 8:36 pm

yeah, I tried talking about this on NeuroTalk and my links to this site were deleted.
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Postby chrishasms » Thu Jul 16, 2009 10:06 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 12:07 pm, edited 1 time in total.
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Postby coach » Fri Jul 17, 2009 7:52 am

Don't have time to frequent other MS websites. And I think why bother when this one is so good. Love TIMS.
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Postby peekaboo » Fri Jul 17, 2009 8:23 am

touche' Coach :)
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Postby gibbledygook » Sun Jul 19, 2009 5:39 am

I agree with Coach. I've hardly ever gone onto other MS websites. This one is GREAT!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Sharon » Sun Jul 19, 2009 6:44 am

This is where the members research what they are posting...other sites seem to me to be more anecdotal. I have thought about the Accelerated Cure Project though - maybe I will email Art Mellor and see what he has to say.
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Postby Jamie » Sun Jul 19, 2009 7:08 am

i read neurotalk once when looking into hicy but soon got discouraged.

only use, and donate, to TIMS now.
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