I joined FaceBook not that long ago, and ended up with a huge circle of MS friends. It just took off. Their friend would tag me as a new friend and before you know it I was talking with MS friends from around the world. Wonderful! I am quite excited to hear about MS in Israel or New Zealand, or Canada, UK, and even have some Middle Eastern MS friends.

CCSVI became a HUGE hot topic with the Canadian circle. It turned from a small number saying OMG you must see this information to a huge number saying you MUST have this procedure done! They flooded across the USA borders to get into clinics to have this done. Many went to some sketchy areas to have it done, but for the most part they came to America. As many of you know (because I have said it so often) I dont just jump into anything. Not Ty, not Copaxone, not Gilena or other treatments. I want facts first. On first blush I was very excited to see these women (and men) crawl off the post op table and walk down the hall. 3 days later a video shows them navigating their homes without canes, scooters or assistance. Sometimes you would find someone with a month out video showing that they back slid a bit, but still doing well. I want to see these folks on video at 3 months, 6months, 12 months out.

I nabbed 10 of the loudest in the crowd screaming about how we MUST do this. We MUST write our government and demand treatment for Canadian and allowing it to be covered under their health care...anyway I took my top ten and wrote them. ALL of them are about a year out from their procedure. I only got a response from 5. Out of that 5 I found 3 of them said they REFUSE to post a video of them because they had to have the procedure REDONE and had a big relapse and are now back in the chair, or back on the cane...They didnt want a video of them to circulate because it would allow others to see CCSVI as a failure in a way to CURE MS. The other 2 that wrote me had it REDONE 3 times and on the 3rd time got stents placed. One girl had a major relapse of sx and the other has not been able to even come close to what her post op video showed. This mad me angry!

ALL of the women that did contact me said the same thing. They refuse to post a video of them showing that they are no longer in the same condition as they were on post op day 3. They said it would damage their cause to have CCSVI reccognized as their dx and not MS. 3 out of the 5 went back on DMDs and 2 of the 5 increased their DMD from CRAB to TY. This upset me greatly, and I posted a comment to my MS friends that I was upset and felt mislead by those who cheerlead for 1 week past CCSVI but then drop completely off the radar or are only seen in writing, but no longer in video.

I must tell you within an hour my inbox was flooded with hate, venom and such potty mouthed garbage it brought me to tears! Many said I was damaging their cause to make such statements. I was the reason MS was going to stay in the dark without a cure. a couple wished me harm and a couple more wished me big relapses that would land ME in a wheel chair so that I would see what its like to truly be an MS patient. That folks like me who are able to walk, talk and care for themselves have no real clue what its like to have MS. I chopped over 100 folks from my list, and I hate to say it but 90% of them were from Canada. Im sorry that their healthcare system wont pay for this treatment, but that isnt MY fault. Several were VERY angry that I live in the USA and have stated that I have insurance that WILL cover CCSVI and yet I wont seek it. that I am a coward who hides behind the brave folks who step forward bravely to have this procedure done so that I can live a normal life.

I gotta tell you. It brought tears to my eyes that women who supposidly have this horrible disease could lash out and attack me for asking for updated accurate information from those who put themselves on the front line with videos until it hurt their cause. Im sorry it failed for them, but I am so hungry to see the videos of those who promised this to be a cure. btw, the last 5 didnt even bother to answer me, but did jump in on the hate mongering. They were quick to rip into me about how I must not really have MS or I wouldnt make such statements.

Am I wrong? Did I need that? Was I out of line? Anyone else ever met an MS bully? I mean, did folks get this nasty about Copaxone when it came out? or Ty? Or is this a new breed?

It has been my experience that patients with huge pain issues, a chronic progressing condition, etc may displace their anger and rage at anytime on anything or anyone that may trigger it.

Doctors are frustrating, Big Pharm is frustrating, the Government is frustrating, EVERYTHING can become frustrating just getting thru the day. Even a basic diagnosis can be wrong!

I personally think everything has two sides to it. FB which appears friendly on the surface, can create alot of psychological side effects...those are becoming more talked about everyday.

After 40+yrs of being dumped on by just about every frustrated person I saw with serious issues, I left my profession and have become very protective of the few years I have left. I seek quiet and peace now, because I can't take any more of the complex issues that surround everything today. Maybe it is just me aging...having my own pain... or whatever. But I absolutely refuse to do FB in a serious way. It seems that putting yourself "out there" also makes you a target when the situation arises.

So if it were me? I'd just unfriend those who are creating pain now for you. This controversy with the new vascular interventions for MS is going to go on for quite some time ...the medical field moves slowly.

I have stayed away for the most part from the ms pages on FB. It reminds me a bit of how ugly some of the discussions were on MS world a few years ago regarding tysabri.

I dont understand it. Why wouldn't they want to show if it didn't work for them? Why not show that if you have this procedure done you may have to have it done again? These are the people deceiving the public and blaming the doctors for not recommending it.

And this is one reason why doctors are hesitant to perform the procedure. The long term effects have not been studied enough to have any real conclusion drawn from it.

I think it works for some and doesn't work for others just the same as any other treatment for any other disease, not just MS.

What I find amazing is people berating you because you don't have "as much MS" as they do. We all have this rotten disease, we all have to face our own symptoms on a daily basis.

And none of us can make an informed decision without being given the correct information.

its like those weight loss ads that show a woman minutes after giving birth to twins and she put on about 100 pounds of baby weight, and then showing them 2 years later announcing miracle results from this product or procedure. How is that fair?

I say if you had this procedure done, and it works great! show us the videos that you peppered us with before and just after the treatment. If it didnt work for long and you are back to where you came from, PLEASE tell us the truth! We are not children, and we dont need someone to hide facts from us so that we will be more swayed to that position.

I have made up my mind to get rid of about 3/4 of the MS folks I have on my Facebook page. I am quite frankly tired of being peppered with begs for support for folks that want to travel to the USA to have this procedure done. God Bless them, I pray it works I really do, but dont decieve me to get me on your side.

I get the feeling, they put so much hope into those surgeries being THE Cure that when you questioned it, it brought out their disappointment at it not being THE Cure for them, and they lashed out at you for questioning it and maybe inadvertantly you pointed it out to them that it's probably not THE Cure.

The more I read about CCSVI, I think it could be a treatment eventually, but not a cure.

This reminds me of when LDN was the "big thing".

It has helped me. Certainly not a cure. But it has been beneficial to me.

Sally, your daughter takes it and has had amazing results with it. Far better than I have. This is sort of like CCSVI. Depending on the individual....the results will vary. Just as the severity of MS varies amongst folks with MS.

Wow Dej, that sucks the giant lemon.

The big pro/con fights about CCSIV remind me of the meanness that cropped up for an against LDN..

I am family only on FB and a few of those P me off.. Not all of my fam is on FB so I just have 15 FB friends. I get invites all the time and refuse all offers, except family. My page is pretty open. I don't hide, but I like it the way it is.

I'd love to go to some of your walls and say a quick hi and how are ya, but I don't know how to do that without befriending a whole bunch of peeps. I like talking to you here and I don't need anymore than this wonderful place for MS.

I wish that some of our peeps who went to FB and never came back would stop in here to see and support us, Cheryl/ave8grl,Cindy/AMN, DM, Taffy...there are many and names escape me MS noggin..

Dear Dejibo,

I appreciate your situation 100% and have been there many times myself. I've not ever been to any FB pages dealing with medical issues because of the lack of moderation, ignorance of some of the participating individuals, Trolls, and many people simply do not want to listen to an alternate opinion to their own.

I cannot even venture to explain the response you received other than what MrsD pointed out in her post. However, do not let any of this "reaction" stop you from "responding" as you feel and see fit. I find on FB "friendship" is loosely used and very frail.

I would like to share with you what I discovered in one of my readings. As you know, I am not one who backs down easily without proof of being wrong and then I am more than willing to accept responsibility for all of my actions and apologize if necessary.

"Sooner or later, every man [woman] of character will have that character questioned. Every man of honor and courage will be faced with unjust criticism, but never forget that unjust criticism has no impact whatsoever upon the truth. And the only sure way to avoid criticism is to do nothing and be nothing!" ~ Abraham Lincoln

We cannot nor will not make everyone happy with our beliefs, opinions, or expressions. So be it. However, I've found right makes might and to continue forward regardless. I'm sorry you had this experience; but this is a prime example of people "reacting," meaning not thinking first but knee jerk and talking out their *******, rather than "responding," thinking, evaluating, then presenting their side or response.

You are strong Dej and the bottom line of any situation like this is many of those people need to simply "deal with it" and if necessary get counseling. Do not give them permission to have power over your good intentions.

So sorry that happend to you and "no" you did not deserve to be treated that way.
Sounds like there is a lot of serious desperation out there and I guess we can all understand where it is coming from
Oh and then....throw politics into it.
Its a lot easier to complain about something that one can't get......cause once you can get it.....you might take a more serious look at it.
They are desperately seeking a cure and feel they are being denied the chance.

Please don't take it personally and just say a quiet prayer for those who would lash out at you when you mean no harm. At least you learned something which is: MS patients in Canada are not too happy with their medical choices.....and be very wary of who you friend on face book!