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

Crossing My Fingers...

I'm "new" here too. I am so excited about CCSVI. I have been telling everyone about it. I have sent all my paperwork to Dr. Dake, just waiting to hear back from him. My mom wants to have all of her 7 children tested for CCSVI, when it becomes more available, because she has 2 daughters and a sister with MS and two other daughters who are starting to show possible signs of MS. I ...
Read more : Crossing My Fingers... | Views : 2550 | Replies : 11

Poems on my MS - pre and post CCSVI

Poem on my MS - Pre CCSVI
Tuesday January 13, 2009
Jill Nolan

What am I but this custard ?
These ion pumps and channels
This mess of ganglia and pathways
and cortex, all in an ancient salt sea,
Organized by energy and time into crevasses and bumps
and neurotransmitters going hither and thither
Flowing to say wake ! and sleep ! and cry !
And I am at it's mercy, it is without mercy. ...
Read more : Poems on my MS - pre and post CCSVI | Views : 1616 | Replies : 6

Should PPMS'ers and SPMS'ers get to "go first"?

Hi all... I'm still really new here, but then again not really, since I've been reading every post on CCSVI for a couple months now. I feel like I know many of you! Thanks for sharing your knowledge and experiences.

I've had Dr. Dake's address and phone number sitting on my counter for several weeks, trying to decide if I should begin the process of getting on his waiting list. It's not that I'm unsure ...
Read more : Should PPMS'ers and SPMS'ers get to "go first"? | Views : 1836 | Replies : 8

A few pics from my scan by Dr. Haacke

I am still waiting on the 3-d images from Dr Haacke, but these scans are pretty telling. For those who don't know, I only have one internal jugular.

If you look at the very bright part of the top of the jugular, then go about one inch down, you can see where the bone from the vertebrae is pinching the jugular. There is also more narrowing about two-thirds of the way down, which I didn't ...
Read more : A few pics from my scan by Dr. Haacke | Views : 2351 | Replies : 12


I ran across this post on another site ( and thought the information might be useful here. It was posted 11/10/09.

I have some contact info for you regarding testing. First of all, in Saskatchewan, at the Saskatoon City Hospital, you will want to call the office of Katherine Knox,MD, FRCPC at 655-8447. The lady I spoke with there is Bev. They say that they will begin testing in a couple of months after some ...
Read more : Canada | Views : 1709 | Replies : 2

Stanford helps an innovator

This article has nothing to do with CCSVI, but I found it interesting because of the possible use of the invention in cancer and because Dr. Dake and the interventional radiologists at Stanford encouraged the inventor to move forward.

Cassidy: Silicon Valley inventor seeks next big thing in cancer fight
By Mike Cassidy
Mercury News Columnist
Posted: 11/12/2009 12:00:00 PM PST
Updated: 11/13/2009 01:29:14 PM PST

Robert Goldman ...
Read more : Stanford helps an innovator | Views : 1526 | Replies : 5

Relapses - when do they occur?

Hi - this is my first post - so please bear with me :-)

I've been reading a lot about the CCSVI topic, and I am very optimistic about this being the real reason for MS.

I have RRMS, and I would like to discuss the following:

At what time of the day do you normally discover that you've had a relapse, or worsening of your MS-symptoms? ...
Read more : Relapses - when do they occur? | Views : 1745 | Replies : 9

What to do to support healing?

Finally i did it! I went to Dr. Simka in Katowice and he confirms what he has already found in the MRV pictures i send to him: Stenosis in left and right jug due to pathologic valves. Im scheduled for dual stenting the 1. December!

Now im looking for advice what to do after the procedure to support the healing of my nervous system as good as possible. I know of taking lots of vitamin ...
Read more : What to do to support healing? | Views : 1292 | Replies : 1

I've been lurking

I've been lurking here for a few weeks- so much to read! Thought it was time to introduce myself.

I have advanced PPMS. Full time wheelchair user. Problems were confined to my legs until about a year ago. Now I have difficulty with my hands. I use Dragon Naturally Speaking a lot for dictation software. Took long term disability from my engineering job in May.

My question today is, does anyone know if procedures have ...
Read more : I've been lurking | Views : 2828 | Replies : 19

Canadian Documentary ????!!!!

OK... so I've seen posts on this board about a Canadian documentary coming out on the 24th of November. That's not very far away. I searched the whole board for the word "documentary" and got only a few hits. This sounds HUGE !!! Would anyone out there who knows more than I do (which is NOTHING) give us some more scuttlebutt on this ????????
Read more : Canadian Documentary ????!!!! | Views : 23192 | Replies : 152


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