This Is MS Multiple Sclerosis Knowledge & Support Community

I see lots of use of the words liberation, cure and cause on Canadian websites and posts. These words weaken your message. "Treating CCSVI syndrome with balloon venoplasty" is a justifiable message but seems too simple for some. MarkW Hi Mark, Sorry I missed your comment until now. I understand wha...

I am very well aware that it is all about the money. Here is part of a statement on the CCSVI Worldwide Victory website that I made about Biogen and how they minimize the risk: So, we have a company that brings in $1 billion annually off of Tysabri sales. Are we to believe this was an oversight on t...

Thanks for your comment CeCe. I agree that the walk-n-roll is an awesome event. If we could have one of those in every major city in the US, it would be wonderful. Unfortunately, I can't be in Florida. Plus, I don't feel I can adequately plan a walk-n-roll in my area. However, I can attend an event ...

Just wanted to say thanks for posting these continuous updates. After finding out my friend has PML, and all she has been through, it's all I have had on my mind today...

It's so sad that Biogen continues to minimize the risk of PML.

Thank you all for your comments. I am trying to figure out if people are of the same mind set at last year. In the US, it seems we have treatment centers, but little CCSVI awareness. In Canada, it seems there is better awareness, yet still no treatment. Both the US and Canada seem to be feeling as t...

What a wonderful, exciting, strange, historic year it has been! CCSVI is making history!!! I still look at the events of the past year on the verge of disbelief. Not that I don't believe CCSVI, I've seen my venogram pictures, and I am not just a "hypothesis". On the contrary, it is almost unbelievab...

Hi hwebb,
I figured you were convinced by your messages and your profile picture. I am looking for a place to get treated myself. Hope all goes well for you the second time around. CCSVI totally makes sense.

Hi hwebb, I have heard from several people that personally knew the lady who passed. They say that her family made a public statement that she did not die as a result of the surgery, but of the same condition that her mom had. However, even if we did count her situation and the other one, the odds w...

I agree, the risk is growing.

Hello Dr. Sclafini, Thank you so much for taking valuable time to respond to our questions. We have so much respect for you and what you are doing! I recently talked a local interventional neuroradiologist into doing the catheter based venogram. He seemed interested at first, then he must have learn...

Hi Rose, I have found that is is the BEST way to get the word out. I have made a group for each state so that we can go local with out efforts. To find your group, visit here: http://ccsviworldwidevictory.com/FacebookGroups.aspx and look to the right for your state. Am I correct that you are from Ca...

May 5th is shaping up to be a very important day! I have to commend all you in Canada for an AWESOME job!

I just started a thread for demonstrations in the US. So, if you are interested, it's the thread called CCSVI Awareness. There is information for everyone there, not just US.

Hello everyone, Since February 27th, when I first posted a message on This is MS about ideas for CCSVI awareness, SOOO much has happened. I never dreamed just where that message would lead us! It turned out, that some very creative; awareness savvy people joined the conversation. They suggested wear...

Hi esta,
500 cards is 500 potential people that you get to share the news of CCSVI with, and just think of how many people will see those caps!

Yes, I know, I'm not crazy about how Vista Print advertises and prices. Bottom line though, the end price is actually very good compared to the other companies I checked out. They are around half price compared to the other companies. What makes you nervous about the caps? I only have to order 12 at...