CCSVI- just the facts, ma'am

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

Postby Mikkysgl » Sun Nov 22, 2009 1:22 pm

thank you for the direction cannot wait to watch the documentaries, gather all the research and bring it to my next nuero appointment! I am new to this site and not quite sure how to navigate to the correct thread to find out - the people who have had surgery- are they remaining on their MS therapies, if they are on them. Currently I am not on traditional drugs, but the disease is showing signs of activity per my latest MRI so off to therapies I am. thank you again - i will tak etime to update my profile in the next couple of days - and found you all through the FaceBook page, which I am now a fan.
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Postby ozarkcanoer » Sun Nov 22, 2009 1:28 pm

Mikkysgl... There are also many links on the CCSVI Facebook page to the "The Liberation Treatment" documentary. Facebook is easier for many people to use. Glad you are here !
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The National Multiple Sclerosis Society announcment!

Postby maxmum » Thu Dec 03, 2009 12:55 pm

The National Multiple Sclerosis Society has announced that it will fund studies into SCCSVI!

http://www.ctv.ca/servlet/ArticleNews/s ... hub=Health
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Postby Sharon » Thu Dec 03, 2009 3:10 pm

Maximum -

The article says "U.S. Multiple Sclerosis Society" - there is not a US Multiple Sclerosis Society.

There is:
MSAA -Multiple Sclerosis Association of America
and
NMSS - National Multiple Sclerosis Society.

It is unclear which society the article is referring to.

Sharon
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Postby Sharon » Thu Dec 03, 2009 3:16 pm

Mikkysgl

Use the "Sticky's" at the top of this forum. http://www.thisisms.com/forum-40.html

The "sticky's have all the research, the tracking data, a glossary of frequently used terms. You can also use the search function by author or by topic - for instance "insurance" "Stanford".

Glad to have you here -- so much to read for the newbies!

Sharon
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Postby andrepol » Thu Dec 03, 2009 3:49 pm

Sharon wrote:Maximum -

The article says "U.S. Multiple Sclerosis Society" - there is not a US Multiple Sclerosis Society.

There is:
MSAA -Multiple Sclerosis Association of America
and
NMSS - National Multiple Sclerosis Society.

It is unclear which society the article is referring to.

Sharon

I believe it is the one of Canada
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National MS Society

Postby maxmum » Thu Dec 03, 2009 4:38 pm

Hi,
This is Maxmum not Maximum. Max was my GS dog. I'm his mum. This name comes from the 90's when I first went online.

Sorry for any confusion about the name of the MS Society in the United States. I'm Canadian. So is W5.
I also called CCSVI sccvi or something. I'm so excited.
I suppose to avoid confusion with the MS Society of Canada who announced last week that they would be funding CCSVI research, it was phrased as the US Multiple Sclerosis Society instead of the National MS Society. So it's the national one.
But they are going to fund this research. This is a huge win for all of us.
Some day you may say "I used to have MS."



quote="Sharon"]Maximum -

The article says "U.S. Multiple Sclerosis Society" - there is not a US Multiple Sclerosis Society.

There is:
MSAA -Multiple Sclerosis Association of America
and
NMSS - National Multiple Sclerosis Society.

It is unclear which society the article is referring to.

Sharon[/quote]
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Postby Sharon » Thu Dec 03, 2009 5:01 pm

Oh, sorry Maxmum :oops: ! So many newbies names for us oldies to remember.

BTW - thanks for posting the story

Sharon
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Re: National MS Society

Postby andrepol » Thu Dec 03, 2009 6:40 pm

[quote="maxmum"]Hi, (...)
I suppose to avoid confusion with the MS Society of Canada who announced last week that they would be funding CCSVI research, it was phrased as the US Multiple Sclerosis Society instead of the National MS Society. So it's the national one.
But they are going to fund this research. This is a huge win for all of us.
Some day you may say "I used to have MS."

So we have at least one "ally state"

:)
I guess there isn't such a hughe Pharma-industry in Canada, or?
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Re: National MS Society

Postby maxmum » Thu Dec 03, 2009 10:10 pm

andrepol wrote:
maxmum wrote:Hi, (...)
I So we have at least one "ally state"

:)
I guess there isn't such a hughe Pharma-industry in Canada, or?


Yes, I think we're pretty much pharma controlled here in Canada, just as every other country.
All of the medical schools are controlled by them. So your average doctor is also.
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Postby Sharon » Thu Dec 03, 2009 10:44 pm

Suggestion to the newbies -- the threads which are noted as being as a "sticky" (and this is one of them) really should not be used for comments. The "stickies" are to present information and the thought is to keep them as short as possible without the reply posting. This way a member will be able to read the "sticky" thread, get the referenced information they need and then start a new thread if they have any questions. Hope this makes sense to everyone. :) :roll:

Sharon
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THANK YOU!

Postby corrine » Sat Dec 05, 2009 12:31 pm

This article is a real help. I am in mass., USA. I will see about Dake but I imagine it's going to be tough getting an appointment & of course I don't have the money right now!

Bless you for helping,
C
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Letter to Editor

Postby judipom » Sun Dec 06, 2009 6:22 pm

Hello--Judipom here from North Carolina. The editor from the Chapel Hill News emailed me to let me know that they will publish my letter regarding CCSVI and MS. In the letter I ask that North Carolina researchers, physicians, funders and congress people team together to further test Zamboni's research and make diagnostics and corrective procedures available to people in North Carolina. Don't forget to use good old fashion news media to get your messages out. I will post a link to the letter when it's published. Feel free to send one with your name to your local newspaper. Down but not out. Judi
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Postby SandyK » Mon Jan 04, 2010 11:21 pm

Judipom, I am so impressed with the response you're getting. I tried our local paper ( Seattle Times) and haven't heard a thing. Keep up the fight! I am right beside you.
Diagnosed 1994, Self EDSS is 6.5
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Postby whirlaway » Tue Jan 05, 2010 6:57 pm

i have had MS for 27 years. I recently had a MRV that showed no narrowing in my viens. I was not happy with my MHV. What to do next?
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