I think the crux of the sitation came because Canada refused to believe/listen to/ or entertain thoughts of CCSVI being the cause of MS sx and dx. There is a huge Canadian crush on right now for the Canadian government to step up and include it on the NHS. To pay for it. So far the only ones from Canada who have recieved this treatment are those who wandered across the border with a fist full of cash. Some went to reccognized centers and some went to less reputable stations. The push has been on for weeks now to click "LIKE" and it triggers a response to the Canadian government. Or Sign my petition. or support this little canadian housewife who wants to travel to New York to have this treatment because the mean old Canadian government is being abusive to her by denying her care.

#1 I live in America. I dont live in Canada, so ANY petition I sign is useless! My american signature carries NO weight!

#2 I have insurance, and live close to 3 CCSVI centers. I can travel by car less than 4 hours in each direction for 2 of them. I have great insurance and its covered! If I have a vascular issue, its covered. Wouldnt cost me a single penny. (minus travel)

#3 I want more REAL info. NOt some video taken 2 days before, then 2 days after, and we never get to see you again. I dont care if you had it redone, or suffered a relapse, I want the truth, the WHOLE truth and nothing but the truth. To color it makes me think you are hiding something, and guess what, I found out 10 of them ARE!

#4 spitting venom at me wont get you very far. Just ask my sister.

#5 im not stupid. I have my MSN in nursing from Yale!. I did prison nursing and inner city paramedic work for 25 years. I know how to read between the lines, and I know when 2 and 2 are not making 4. Because I am waiting to see what happens doesnt make me a chicken nor a coward.

I feel better now that I hacked off several dozen from my FB page. Yes, I left a few CCSVI folks, because I want to follow them, but anyone who was even slightly aggressive is now history. I have MUCH better things to do than to allow pot shots by crack pots. sheesh!

I've been watching for any news online from people who've had the CCSVI procedure done on FB, Youtube and various message boards too. I have to agree with all that you've said, Dej. I've had guarded optimism about the procedure and think it can help some of us. It seems to work better in those that are more recently diagnosed. That's the same as most of the DMD's though too.
The most important thing I think everyone needs to remember is that all of us with MS are in this together and we're all looking for answers. The people that lashed out at you so angrily , Dej, I think, had such high hopes that this procedure would be their fix-all and when it wasn't, they vented their anger at you unjustifiably. I'm sorry to hear that happened to you

I feel much better today. I dunno, I think I just thought that we MS folks need to stick together, no matter what the choices we make. Some want R and some want C and some love TY while others are afraid of it. Some use LDN and others think its nonsense, but we can all stand in the same circle and discuss it, yes? Bunch of babies! I felt like I was back in high school all over again. I hacked off many from my list and wont look back. I am too old, too sick, too tired, and too grown up for that non sense.

I expect my teenage children to lie to me. I expect inmates to lie to me. I expect the neighbors kid who threw a ball thru my window to lie to me. I expect the car dealer to lie to me, but NOT my fellow MS sisters and brothers. For God Sake, this is about OUR disease! I think that is what got me is that they were lying thru omission about this thing that so many of us sit on the edge of our seats to hear about.

I LOVE that they dance down the hall in their post op videos but then...they disappear! You only hear them, not see them. They are working feverishly to get their government to pay for this experimental procedure, and are quite angry and vocal about it.

Anyway, thanks for the hugs, and the support. I think they were bang out of order on this one, and ya know what? it makes me LESS likely to seek out CCSVI treatments if those who went thru it feel they need to lie about it after to trick others into it. Sheesh! Im not 13 anymore!

Here is a bit of negative feedback, I found, about CCSVI......

http://www.thisisms.com/ftopic-12342-days0-orderasc-240.html

I think Erin nailed it. They are probably horribly disappointed and yet imo still clinging to hope. It is up to them if they want to share their results and if they don't I would just assume there is more to the story and leave it at that. People can get vicious if they feel challenged.

The other thing to keep in mind is that all people MS or not can be nice, mean, smart, dumb etc. In my opinion there is a fair amount of emotional instability in people with MS as illustrated by the hysteria generated when this procedure first came out.

There is a ton of denial with this disease and it still amazes me that I get blasted on another board when I lament how debilitating MS is for so many people, that we should be informed of and consider the genetic implications and that just because we are in decent shape now that doesn't mean we will be tomorrow.

Amazing! I would show up to my FB page and it would take me a long time to catch up on what was going on, and read the reasearch stuff, and send out hugs and prayers to those in need, and so forth. Removing just 10 folks dropped the traffic on my page by an astronomical amount. I didnt realize how much stuff they peppered on my page about canadian government or petitions or whatever. The next 50 that got dropped off caused all those silly polls, and abused animal things to drop to next to nothing. Im sorry that animals are being abused, but why show me some dog being skinned alive in china? That serves to do nothing but haunt me all day! The next 50 that got dropped caused all those polls, and political venom to crawl to an almost stop. I dont care what political preferences you have, just dont force lies, half truths and BS on me once an hour. Get the facts, and then come back and lets talk.

Anyway, it was one of the best things I did! I can now show up, check up on folks I have come to love, send prayers and hugs for those struggling, and not have to wade thru an hour of BS and hiding posts. My friend is an animal rescuer and her posts are so wonderful about others that are helpful, and things you can do something about right here! no more stomach churning posts about such horrific acts that I dream about them. I get a few cutsie posts about singing babies or funny kitties and I can actually enjoy them now that I dont have to spend my whole time there chopping off anger provoking things.

Sooooo much easier on me now! I dont have the visual acuity to sit for hours on end to read all that stuff, nor investigate it anymore. Its nice to have peace again.