CCSVI dead? Not so fast!

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

CCSVI dead? Not so fast!

Postby dania » Wed May 01, 2013 11:20 am

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Re: CCSVI dead? Not so fast!

Postby erinc14 » Thu May 02, 2013 8:13 am

good !
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Re: CCSVI dead? Not so fast!

Postby questor » Thu May 02, 2013 11:24 am

I wouldn't touch facebook with a ten-foot pole, I'm obviously part of a minority in that respect, but I'm sure I'm not alone.

Could you copy the info from facebook that you think is important and paste it to this topic, so that we don't have to give up our privacy to view it?

Thanks in advance.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Former Ampyra User
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Re: CCSVI dead? Not so fast!

Postby SLOV8213 » Thu May 02, 2013 12:10 pm

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Re: CCSVI dead? Not so fast!

Postby cheerleader » Thu May 02, 2013 2:32 pm

Here is the direct link to Anne Kingston's well-researched article for Macleans. It was written in response to an opinion piece in the same magazine. All the links are here:

http://www2.macleans.ca/2013/05/01/ccsv ... t-so-fast/

Facebook has been a good thing for many of us, connecting MS advocates around the globe...but it's certainly not right for everyone.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI dead? Not so fast!

Postby dlynn » Fri May 03, 2013 7:27 am

cheerleader,
Thank you for the years of research and effort and time you've given to all of us with m.s.
I've been helped immensely from all the information you present on Facebook CCSVI in m.s.
I've read all your "notes" since the beginning and I've learned so much. Although I'm not a
Facebook member and I can't reply, I can still view what is posted and benefit from it.
You've been an awesome blessing to me, thank you.
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Re: CCSVI dead? Not so fast!

Postby Cece » Fri May 03, 2013 1:47 pm

If it's correct as dlynn says that Facebook notes can be viewed without signing in or 'liking' the group, then that should be ok for privacy concerns?
Some snippets, written by Anne Kingston:
PubMed lists 136 CCSVI-related studies: the positive ones, which outnumber the negative, tend to be reported by vascular specialists in vascular journals; negative reports tend to be found in neurology journals.
Recently, the University of Buffalo researchers who staged the first randomized, controlled clinical treatment trial (on nine patients) took the usual step of reporting its negative results on YouTube before they’d been accepted for publication.
I think she was going for the word unusual!
“CCSVI is far from dead,” [Haacke] says. Haacke, also affiliated with Hamilton’s McMaster University, has screened more than 2,000 MS patients with MRI (he says the operator-dependent ultrasound used in many CCSVI studies is inconsistent). “We see significant abnormalities in the 650 cases we have processed so far,” he says.
But he’s right that CCSVI treatment outside of a clinical setting can be an opportunistic Wild West; standards and quality vary.
This has worried me since I first realized how different the techniques (and possibly results or safety) can be from one IR to the next.
CCSVI remains a puzzle. But increasingly it’s clear it’s a puzzle piece–and building block in terms of sparking investigation into the woefully understudied and little-understood venous system.
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Re: CCSVI dead? Not so fast!

Postby erinc14 » Sat May 04, 2013 7:25 am

just a quick question . has ms ever been proven to be an autoimmune disease ?
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Re: CCSVI dead? Not so fast!

Postby dania » Sat May 04, 2013 7:49 am

erinc14 wrote:just a quick question . has ms ever been proven to be an autoimmune disease ?

NO, NO, and NO!
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Re: CCSVI dead? Not so fast!

Postby erinc14 » Sat May 04, 2013 10:04 am

okay thanks ! just wanted to make sure .
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Re: CCSVI dead? Not so fast!

Postby cheerleader » Sat May 04, 2013 10:09 am

Erinc-- Here's a great editorial paper by Dr. P.O. Behan, a neurologist, on the fact that MS is still an disease of unknown origin, and the EAE mouse model and autoimmunity theory should not be accepted as fact--and the result of accepting MS as autoimmune has been "catastrophic." It's the best explanation of the problem with the EAE model/autoimmunity model out there. Highly recommended reading.
http://www.expert-reviews.com/doi/pdf/10.1586/ern.10.69

Dlynn--thanks for the thanks. This is an incredible community, and I'm honored to be a part of the search for answers.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI dead? Not so fast!

Postby questor » Sat May 04, 2013 4:00 pm

dlynn wrote:Although I'm not a Facebook member and I can't reply, I can still view what is posted and benefit from it.

dlynn,
When I try to open a facebook link (I'm not a member), I am transferred to a login page, and am told I need to login to view the link.

How do you work around this?

Is it possible someone else who uses your computer is a facebook member, and has checked the option to remain logged in? In that case, perhaps the facebook cookie on your system allows you to bypass the login page.

Or, is there a technical trick you use? If so, I'd like to learn that one.

Cheerleader, and SLOV8213,
Thank you for posting the non-facebook links to this article.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
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Re: CCSVI dead? Not so fast!

Postby Robnl » Sun May 05, 2013 12:48 am

erinc14 wrote:okay thanks ! just wanted to make sure .


It's 'just' a hypothesis from 1960 :mrgreen:

some thoughts;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1168912/
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Re: CCSVI dead? Not so fast!

Postby NHE » Sun May 05, 2013 1:14 am

questor wrote:Or, is there a technical trick you use? If so, I'd like to learn that one.


I'm not a facebook member though I do know that some facebook pages, like Cheer's CCSVI page, are open to the public while others are not. The decision to be open or not is up to the person who manages a particular facebook page.
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Re: CCSVI dead? Not so fast!

Postby dlynn » Sun May 05, 2013 5:52 am

Hi questor,
I just type in "facebook ccsvi" and click on "CCSVI in Multiple Sclerosis/ Facebook".
My husband and I aren't members and no one else uses our computer (just the two of us).
Maybe once or twice I was told to "log in" but I just arrowed back and tried again, it worked and hasn't happened since.
I hope you are able to access facebook ccsvi, there's so much info., you can click on "notes" or "forums"
too. I hope this helps.
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