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?