I don't do videos. Pre, Post or anything. Also, I don't like to brag, or try to convince people to try something, just because I did. I am only 5 months out from having the CCSVI procedure. I am a pioneer and proud of it.

I try what I feel I want to try, and I take meds that I want to try too. It's my choice. Everyone has the right to their own choice.

I am doing very well, and very happy about it too. Much better than pre procedure, but nothing is ever written in stone. Nothing comes with a guarantee.

Some people pioneered in drug trials, like the CRABS or the Tysabri people, or even the new drugs out today. It's their choice. Some pay a lot of money to take these drugs and they have ins. It's up to them. They don't know what the future holds for them anymore than I do.

We can just do what we deem correct for our mind and bodies and pray. That's what life really is all about.

If you belong to a Facebook group that makes videos, then I guess you want to be out there making videos too. I'm glad people want to do that for themselves and others. It's just not my thing.

Thanks for sharing Dej. She was a honest woman. I wonder how many people lie, or never really had it done and say they did? I wonder how many naysayers do video's? We really can't tell can we? Just like people who criticize a drug because they want you to try another. Some people may be advertising a CCSVI facility or a drug and be a normal person, we don't know.

Reading real studies and reports, watching drs video's, and doing your homework on anything you want to try, is the best way to go. JMO

For the record, the only reason I haven't posted a follow up video is because I wasn't the one who posted my first video (and 'cause I don't have a web cam ) . It was done by another organization and I found out it was going to happen literally as I was going in for my ultrasound in Bulgaria. Just to play devil's advocate - couldn't even someone who had totally regressed hold it together enough to make a happy smiley follow up video if they were so inclined?? Short of making people do neuro scoring on the video what does someone sitting there talking really truly prove? Just sayin'...

And no, I haven't had a relapse and hid it. I do still have MS issues and bad days, just not near as bad as before.

I do agree that some of my fellow Canadians are getting too aggressive over the issue. However, I am also p!ssed that I had to travel overseas and pay thousands of dollars for something that could have been done here for $2,000 and I could have slept in my own bed that same night. Yeah, this doesn't provide relief for everyone, but pretty much NOTHING in medicine works for everyone. As a Canadian I'm not even asking the government to pay for our treatment here. Just let us have it here and we'll even foot the bill. I could get a totally medically unnecessary tummy tuck here but they will professionally censure an IR that treats my screwed up jugular vein??

I would never hector someone for opting not to have the procedure though. It was a good decision for me, but I'm not going to force it on someone else.

Thanks so much Lady and Jacksonsmommy

I know this has exploded in Canada and many are spending upwards of 20k to go get this done. There are fundraisers in every corner for others to get this done. As you saw in this girls video she sets aside money because she knows she will have to have that stent cleaned out, as she expects the symptoms to return. They feel themselves to be pioneers in medicine and that this simply must be the next best thing to the Polio vaccine. Very excited and very vocal about it.

I had not thought of anyone lying that they had the proceedure, but have heard of a young man that was cut out of several circles because he went to Poland to have the PRE test done, but never followed thru with the real thing, even tho he was blogging about the whole experience. They circled around him and told him off because they felt him wrong for making a blog about his own experience. In the end he couldnt raise the money, and hoped his blog would help him do that.

All I know is I am searching for folks who have honest videos about what is happening. Even if that means redoing it, or relapses, or a huge full recovery and they came in from skipping rope to say "look at me!" one year later. I know that the aggressive ones are NOT out skipping rope and playing outside, they are sitting at their keyboard pushing the Canadian government to fix their system to include this, and sending out massive emails to folks like me who are not ready to try.

To those that have done this, I salute you! You have bravery that I cannot find. You have strength that I cannot find in my own pocket. I have no road blocks preventing me from going to get this other than myself. I am a chicken till I get MUCH more facts. So far this is shaking out to be a lot less than advertised. I will post another honest one when I find it. The needle in the haystack.

Hi! I am sorry you were treated like that on FB. I myself have had a bit of the "Canadian backlash", though not quite as bad. Having followed this from the start, my sense was that many, though certainly not all Canadians, were tossing the baby out with the bathwater. Anyways, this seems like a great group. Keep supporting each other and as far as the follow up vids go, it is true, some of us with stellar results, just haven't the time! Although the pre-post video stuff to me is okay, that stuff came around well after I was treated, so there was no thought to make a pre-video, but my post video celebrating my 1 year anniversary is in the works, if I ever get some free time! I am coming up on 2 years anniversary in a few months, and the past two years (no DMDs) have been nothing short of phenomenal. There just seems to be no upper limit on what I can do in a day.

Vs. before, where it was a day to day survival and begging for nighttime so I could just sleep and forget it all.


Anyways, I wish you all the best, and keep in mind that the internet only represents a small portion of what is out there.

Have a great day.

Dej I just remembered - you're the one affraid of MRI's!

I think CCSVI, valves, veins what have you is awesome finding & can't wait till FDA pulls it's head out it's bleepin bleep bleep

Edit - See, the U.S. is too rich for that right now. It's easier to just pay thirty six thousand dollars - that's $36,000 per yr per MS patient

not only am I afraid of MRIs I have a stomach issue that it backwashes when I lay flat, a broken back so its painful to lay flat for a half hour, even with the pillow under my legs, and I am so nervous! The last MRI they actually intubated me to prevent me from aspiration because of my gastro issues. so...yeah, I HATE MRIs!

I am so proud of so many that have bravely marched where I am afraid to go. I simply wanted more answers before I rolled up my pant leg for access to my veins. I am happy to be seeing more and more videos, good and bad.

For some time I've been noticing that posts on sites that are strongly in favor of CCSVI are sounding a bit shrill.

I've had the feeling that the attitude is: "If you're not 100% for us, then you're against us."

That really isn't so good. Many people are waiting and thinking about it. And why shouldn't some decide that CCSVI isn't for them?

I am a little unfamiliar with this, but I gather it is a process to open closed artery in neck?
Mine are very open. I have had more than one test on it, to ascertain this, due to having another disease which involves the possibility of clots. I believe mine are open because I have followed the Swank diet for a quarter of a century, and even before that could not digest saturated fat well. Now this is a bold statement, and possibly there is another reason for my clear arteries, like heredity? We are certainly a result of both heredity and nurture. I have been on a low fat diet all my life due to my mother's predelictions in that direction, and got my first big sickness 3 weeks after starting a high fat college dorm diet.

Dr. Swank thought that MS was an auto-immune attack on fat in the body, including myelin, which is made of lipids. Could this be related? He wanted the dietary fat very low to keep the attacks low. However, he realized that more was involved, and he thought that something is missing in the blood of people with MS. He was trying transfusions of healthy blood to help some of his patients, and there were many successes--people getting out of wheelchairs and wearing high heels reported. But this
was a temporary thing, too. It would last five months and then another transfusion would be required. I did not try it because I lived l50 miles from him, and I had only one likely blood donor, my husband, and at that point both of us were not well and harried and not up to taking the trip to Portland, staying in a motel while doing this, etc. We just felt it was too much for us to undertake. Swank insisted on using family blood to ensure it was not tainted. My son was away at college and would not have likely come to donate. He thought all these things were nonsense anyway. He didn't believe I was sick
except in my mind. So I never did this procedure, although I feel it was very likely to have made a difference.

Dr. Swank's ideas were wonderful, and he was a very great man. He lived into his late 90's by following his own diet, even though men in his family generally died early of heart disease. My porphyria doctor was at the same institution, and he said the Swank diet was excellent for porphyria too. I see no reason to tamper with success. I'm old and sick now, from new diseases of the blood, but I had years of improvement on the Swank diet. I would get flares if I went off it even for a couple of days.

I do eat more eggs than are recommended, but otherwise I am totally Swanked.

I totally agree that diet plays a big part. I think anybody with any ailment could benefit from a cleaner diet.