CCSVI on Wikipedia, Facebook, Youtube, ...?

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

Postby ErikaSlovakia » Mon Aug 17, 2009 10:56 pm

Very, very good!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Sharon » Tue Aug 18, 2009 3:19 pm

Great job everyone --
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Postby mrhodes40 » Tue Aug 18, 2009 3:57 pm

Worldwide grass roots !!

This assures there is a demand to investigate this thoroughly and well everywhere. It cannot be brushed under the rug!

great work everyone!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Wikipedia

Postby ibex » Mon Aug 24, 2009 8:51 am

Frank wrote:I've been writing in the german wikipedia since a while, also on the MS article. Lets wait for the September conference results and afterwards - if you have time for it - we could work together on a concept, of how to extend the WP article.

Hi Frank

Thanks for your suggestion! It's good to have someone experienced on board. :D
It was also my plan to wait for the results of Bologna and to knock again at the Wikipedia door. :) Let's work together.

I propose to discuss the concept of the German Wikipedia article on the German speaking CCSVI forum announced in http://www.thisisms.com/ftopict-7832.html I'll open a thread there. So, others could also contribute.

Cheers,
ibex
Last edited by ibex on Sun Sep 06, 2009 2:03 am, edited 1 time in total.
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Postby Frank » Tue Aug 25, 2009 2:15 am

@ibex:
Sounds good, read you there...

--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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CCSVI@German Wikipedia

Postby ibex » Sat Nov 14, 2009 1:09 pm

Hi

Since last Sunday CCSVI is mentioned on the German Multiple Sclerosis Wikipedia article. :D :mrgreen:
Multiple Sklerose > Chronische cerebrospinale venöse Insuffizienz

After a discussion with one of the main authors of the MS article, he decided to write himself about CCSVI. :D

CCSVI is also present in other languages:
CCSVI@Wikipedia English
CCSVI@Wikipedia Español
CCSVI@Wikipedia Suomi
CCSVI@Wikipedia Nederlands

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Postby mrhodes40 » Sat Nov 14, 2009 1:57 pm

I am really glad for this development, it reads well. Thank you so much for making this effort!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Sat Nov 14, 2009 4:45 pm

DITTO to Marie's post.

The article is very concise - might be a good one to print out when handing CCSVI info to doctors because it also has the references listed.

Thank you for your efforts
Sharon
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Postby whyRwehere » Sun Nov 15, 2009 12:43 am

I think this bit is a little awkward in English:

Being a physical flow problem is expected that posture health practices and ergonomics at work could reduce the consequences of the reflux. For example, if jugulars are blocked, it could be expected better outcome trying to stand as much as possible in order not to use them[4], but again, no studies exist to date.

Trying to use your words, this might be better:
Being a physical flow problem, the possibility of practising good posture and working ergonomically could reduce the consequences of reflux. In the case of blocked jugulars, the condition could be improved by standing as much as possible in order to avoid using the jugulars[4], but again no studies exist to date.

And, I would add sleeping inclined or sitting up, to the standing a lot suggestion, as it is lying down that really uses the jugulars.
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