CCSVI-Tracking Site

Have you gone to the www.ccsvi-tracking.com site recently?  While the data keeps adding up as the monthly reports are entered, the number of new participants has leveled off.  Have you been liberated, or do you know someone else who has been, but isn't a member of CCSVI tracking?  Please convince them to join and begin entering their data (even if they have to go back to remember what their symptoms were at various times after the procedure), because it is the only international, long-term tracking of a large number of patients with publicly available results. Please, do it NOW!

New Hope for MS Tour: Remember these dates

Try to get to one of the New Hope for MS information rallies in or near your town.  Here are the New Brunswick dates (with more details to follow):

June 2 Thursday
Moncton, NB

June 3 Friday
Sussex, NB

June 4 Saturday
Sain John, NB

June 6 Monday
St. Stephen, NB

June 7 Tuesday
St. George, NB

June 8 Wednesday
Fredericton Junction, NB

June 11 Saturday
Fredericton, NB

June 12 Sunday
Woodstock, NB

June 13 Monday
Grand Falls, NB
Town Hall - Hotel de Ville

June 14 Tuesday
Edmunston, NB

Can Viagra Reduce MS Symptoms?

It's all about good blood flow, apparently: Nano Innovations article.  Hmmm... how do you volunteer for this clinical trial?  But here is Joan Beal's take on this: CCSVI Facebook page.

CCSVI research and treatment trials: the way forward

This is interesting: Joan's facebook article.
As Joan says:

As the rhetoric from the pharma sponsored press and their sponsored MS specialists heats up, rest assured, the scientists who understand the connection to venous disease and MS are NOT BACKING DOWN.  You will not read about what is going on in the vascular research world, it will not get big, splashy press coverage with controversial headlines.   But we'll continue to disseminate it here.  Feel free to print out the research, bring it to your doctors, continue to press for treatment trials, speak out.  CCSVI research is not going away.

The perfect crime? CCSVI not leaving a trace in MS

Here is a link to an abstract of an article in the Journal of Neurology about a small German study where NO CCSVI was found in MS patients: Pubmed article.  Given what a high percentage of MS patients were found to have in much larger clinical studies (from about 60% to 97%) it makes you wonder if the neurologists doing this study even knew what they were looking for, doesn't it?  It makes you wonder if any vascular and/or blood flow specialists were even involved in the study.

Miracle or not?

In one TiMS thread, someone said:

I think the future may show that (multiple) treatments may stop/slow down the disease. For spms and ppms this would be good but no miracle.

To which I responded:

As an SPMSer, I take my miracles where I can get them. One year after treatment, my fatigue remains much better, balance much better, mobility a bit better, bladder quite a bit better, manual dexterity slightly better. Given my trajectory before treatment, this change in my quality of life and outlook is pretty darn wonderful. It's not a miracle because it just makes common sense that improving drainage from the brain will help at least some symptoms. But guess what: if there was a drug that made this much difference to my life, it would be marketed as a miracle drug.

Fixing veins is old hat: Dr. Hewett

Dr. Hewett's presentation on treating CCSVI, with a focus on using stents: http://www.youtube.com/watch?v=A_R88CJTiX8.  Thanks, Melissa, for the link.

Lucy's Report

Here is the gist of an e-mail that a newly liberated woman sent me:

Hi Ted,

Thank you so much for your email.

I had the CCSVI procedure done in Edinburgh during Easter weekend (just past, 2011).

I can't really say I have noticed many changes myself . . .yet!!. . . , although people are telling me they see changes. Some know I have had it done, others don't. People are telling me I am slurring my words less (this used to get worse the tireder I was). Also, that I am walking better (although it doesn't feel like it!) I also seem to have more stamina and more strength (I have an energetic one year old and I can do more with him and lift and hold him much more than I used to). I can definitely stand for longer than before without sitting down and my knees don't seem as stiff or sore. Don't really know what that is about.

I was really ,really tired after the procedure and this lasted for 6 or 7 days (I just put it down to my body healing). I just wanted to sleep all the time. Not really the MS fatigue wall I would hit thought, more of a heaviness and physical tiredness (like I had just been doing a lot of work).

My husband took video of me doing things before CCSVI like heal to toe, walking, balance on one leg, standing with eyes shut etc. I have not taken another video. I was going to do it again at the one month mark as I thought this would be a better indicator of change.

I am not relapsing just now so the biggest change for me will be seeing how I am doing in a year's time. I am also taking LDN so  I won't really know if changes are due to that or CCSVI. To me though, as long as I stay the same or improve I really do not mind! My main focus is on keeping well not 'proving' CCSVI works. I know some people have has significant immediate changes - I don't seem to be one of them. In saying that I went ot on my tricycle last weekend and althought really tired and wobbly afterwards I did over a mile and a half - first time in 3 years!

My biggest symptoms before were fatigue, balance, poor walking distance and difficultly writing (I am left handed). Everything else (bladder, numbness and tinging, cold hands and feet) were pretty quiet just now and not at all as poor as they have been.

My left leg, side really, was always weaker and the 'cuff' that seemed to be around my leg disappeared or almost went but now it is back. I want to go for a walk to see how far I can go but I have been really tired until now. I aim to go at the weekend if my energy is up to it. I will do this with my walking sticks as my 'arm' usually do most of my walking!

I am so encouraged to read that you saw changes a while after the op. It was 20 years after my first  episode so it makes sense it may take time for my body to heal. I asked the surgeon how long I had had blocked veins (azygos, right and left jugular and malformed valves and he said probably all my life, probably since birth).

Thank you again for your email. I really appreciate finding out how your are doing after the procedure.

Regards
Lucy

Gutsy Journalists and Crusading Lawyers

Given how the drug companies and the Consortium of MS Clinics are reacting to the Serono story, I'll revise my previous request: I'd like to find a good investigative journalist AND a good lawyer who would like to get to the truth and expose the lies.

MS Consortium Wants “Money Laundering” Allegation Buried

Joan Beal, faced with a lawsuit, took down the Facebook page alleging money-laundering by the MS Consortium: http://bit.ly/kavCE0.  This is the problem when the government settles out of court in these kinds of situation: the truth does not get told!  Here is the copy of the court case allegations filed in 2005 by Tim Amato: http://freepdfhosting.com/543bcc781b.pdf.

Another take on Pharma, MS clinics and payola

Wheelchair Kamikaze is disgusted by what drug companies, a consortium of MS clinics and some doctors have done: WK's rant

How MS Drugs Are Promoted

This story makes all those conspiracy theories about drug companies suddenly start to sound very believable: see this BNET blog story and this facebook page about drug company chicanery.  And the executives seem to be getting away with it for a second time!  What about the doctors and MS Centers that colluded in this travesty - who's going after them?

What's really scary is that, in Canada, there's even less oversight by the government. Does anybody out there know a gutsy Canadian journalist who'd be willing to "follow the money" on this side of the border?

Thanks for the link, Shelley!

Oh, and here's more on that story: http://on.fb.me/j6xUlx

New Hope for MS tour begins

Here are several stories about the launch of the New Hope for Multiple Sclerosis cross-Canada tour:

• Global News
• Daily Gleaner
• Canadian Press

Way to go, Tim and John!

Chris Alkenbrack Radio Interview on Youtube

A great, informative interview concerning CCSVI and MS, CCSVI rallies all across Canada and the New Hope for Multiple Sclerosis tour being undertaken by my friend Tim Donovan: http://www.youtube.com/watch?v=c21gSqr8zAY

Still another report from a fellow "graduate"

Here is what Susan reports:

Good for you, a big party to surprise you, Ted!

Last year, imagine!

I had to have another liberation, for my stent was closed and on the right side I only had 50% flow. I’ve had a second treatment in Belgium, and am still paying lots of money. Hopefully my insurance will pay back after all. I’ve written 9 pages to encourage them to do so. So now they are contacting Simka + surgeon & the surgeon in Belgium, to ask whether the stent was absolutely necessary.

Hopefully my arguments have been of any help, I will let you know what happens.

More Progress of Fellow "Graduates"

And another reply, this one from Val:

Hi All,

What a year it's been. I went to Pacific Interventional in California in February to have a very extensive MRI. They use the Haake protocal MRI down there and I was in the machine for 2 hours. This place is quite amazing, they have done 700 procedures and are very cutting edge. They use the larger balloons that the Kuwaiti doctors use. They are finding that many of us are under treated and our valves need disruption with the big balloons. Dr. Arata said that looking at my MRI he would have thought they would be doing surgery on my because there was stenosis in all three veins. My only vein done in Poland was my right Jug. He did a consultation with me and said that I appeared to be doing very well and he does not believe in fixing what isn't broken. I have no pain or fatigue as of a year ago. I have a lot more skill with balance etc. I will continue to go to CA for an anual MRI and hope that it stays going well.

We are the pioneers and I wish all of you well. This year has been good to me and every day I am so thankful. Thanks so much for sharing your stories.

Progress of Fellow "Graduates"

After sending them an update on my condition (as per my blog post a week ago), I've had "one-year-later" notes from some of the other people who were in Katowice with me at the same time I was being liberated:

From Tony: Yes it's hard to believe we were all sat in Katowice this time last year comparing notes and looking forward to the future. In my case the improvements and changes I've personally noted are really a mirror of Ted's experiences and emails, nothing major in reversal terms but small improvements none the less. Less fatigue is the biggest winner for me as well.

I should get my veins checked again this year as well to see if I'm still flowing in the right direction but not sure whether to make the journey back to Poland or seek a specialist in the UK. I'll do some more research on that one first.

We've had glorious weather here for the last few weeks and I've spent most of my free time catching up in the garden which was definitely out of the question pre-liberation, so something is working!

From Inge: Great to hear from you. And with such good news. It is indeed strange to think that it has been a year already. For me, the procedure in Poland marks a starting point of stabilization of my MS, but not recovery. I feel that the second procedure I had in Belgium marks the beginning of recovery fully. 

Since then, I noticed serious improvements: in balance, energy, strength. I haven't used my wheelchair in the office since January. Instead I am able to walk with a walker/stroller from my car to my desk, to the canteen etc. Major improvement for me: I am no longer dependent on my colleagues to pick me up in the garage and help me in my wheelchair. 

I notice I have much more energy, even to do things at night. Before, I collapsed totally exhausted in bed by 21h. 

I am happy to hear that you still notice improvements, even months after the procedure. It gives me hope that i can further improve. Right now, I am on a vicious physiotherapy regime. All in order to gain muscle strength. Then I hope to be able to walk longer and/or further.

I am experiencing a sort of catch22: the more I walk, the more I have spasms and muscle cramps. Which hinders me in walking. But if I don't walk, I get stiff anyway. So I keep on training... In the end this seems the best route. ;-) 

My Big Fat Surprise Liberation Anniversary Party

Well, I was gob-smacked... I had no idea it was coming, which meant that several dozen friends and family had to keep it a secret for over a month.  What a great time we all had... I hope this link takes you to the Facebook album: Ted's Liberation First Anniversary party.