Wow, faster than a speeding bullet. As some of you have said, be prepared for your neuro to dismiss the idea out of hand, without even reading the material. I sent the December ’08 paper to my PCP. He read it, was cautious but thought it was interesting and wanted me to talk to my neuro. I had my annual checkup with him this week, so I prepared my “speech” and brought the paper. He shut me down, FAST. If he had a door, he would have slammed it in my face and broken my nose. It’s taken me this long to get my mad down to a reasonable level so I could post.
He actually said, "I can think of a 100 different reasons why this theory wouldn't work." And that was only after a 2-minute description of events, and not even looking at the paper!!!!!! I didn't take out the study or the research that relates to it. He wouldn't have looked at it. So he has no idea of what they did and didn't do. He was irritated. He said what needs to be done, if this ever were to proceed, is that they'd have to do a trial on a 1000 patients, then a double-blind trial on another 1000 patients, and all sorts of other different trials, etc. etc. etc. It was almost painful. Just picture a dog with his bone. Honest, I swear he was almost snarly. And he also had the nerve to say he had never, ever heard of CCSVI before. Not even in any of the really obscure journals that come across his desk. So if he doesn't know about it, it doesn't exist? Does he realize how dumb that makes him sound??
Honestly, where in the world does he think these 1,000's of people come from for trials? Doesn't everything have to start somewhere?? And it's not like I'm chasing after every rainbow here. I’ve seen him 4 times in the three+ years since I’ve been diagnosed. I want a non-invasive test to see if my jugulars and/or azygous are blocked. Call me crazy. So when my husband asked how we would go about getting the MRV if we still wanted to proceed, he said we could always go out to Stanford and enroll in the trial. Hah!! Joke’s on him there!!! I didn’t have the heart to tell him it’s not even at the trial stage. He probably would have had a stroke. It was clear 20 seconds after I started that he was annoyed, so I didn’t bother refuting anything since he clearly wasn’t listening. And he was wrong on so very many points. I could go on and on, but I’ll just mention two other things. I asked, “MS aside, how does a healthy body function with only 1 working jugular vein?” His answer was that the body compensates. Sure it does, until it doesn't, and your diagnosed with MS. And he was really turned off by the idea of stents as a fix. That led to a whole other lecture.
Going in, I was just hoping he would say, “Hmm, that sounds interesting. Let me take the paper and read it to see what they’re doing.” I wasn’t asking him to become a believer based on what I had told him. I WANTED his opinion on the research and to check with his contacts on Dr. Dake. But to get there, he’d had to have read it first, now wouldn’t he?? And if he had doubts after he had read it, that’d would have been ok. Not what I would have wanted to hear, but at least it would have been an informed opinion on his part and we could have had a discussion. The funny thing was, up until I brought this up, it was a very pleasant appointment. We talked about taking Copaxone, and he even asked for my chart on the Copaxone price increases and wanted to talk to the TEVA rep about it. That wasn’t even on my agenda, but he was interested in it. I'm sure that paper is now filed away in the circular bin.
So we'll regroup, adjust and decide what to do next. One of the first things is looking for a new neuro. Now that’s something I definitely wasn’t planning on coming away with. Sorry about the long post, but I had to get it out –it’s 3 days later and I’m still fuming!