Wasn't sure which thread to post this under, but here it goes...
While at the doctors office today getting my Tysabri infusion I thought I'd ask my nurses if they had ever heard of CCSVI. They had not. It did however stir up quite a conversation between the patients and the nurses. I don't want to put words in their mouths, but they did seem genuinely excited.
We discussed several of the nuances of MS and how they might relate to CCSVI and we "checked"them off one by one. It was so exciting to talk to some real life people (as opposed to my TIMS network) who actually sounded like they thought this could be something. Direct quote "This really does make sense."
One of the nurses even called in a 3rd nurse and asked me to tell her about the study. Soon after she called in a 4th nurse and I repeated our story to her as well.
I decided to tell this story under the skepticism thread because of the reaction of the last two nurses. The last of which began our discussion with a brash "I've never heard of this study" and concluded our brief (2 minutes or less dicussion by saying (and although I am quoting please keep in mind that this is from my MS brain's memory),
"What is it you want?",
"Excuse me?" ,
"What is it you want? An MRV? "
"There is NO way that Dr. _____ is going to give you an MRV."
"Okay, then who could?"
"I don't know.. maybe a Cardiovascular (something), but there is no way Dr. _______ would do it. I mean... he might, but I doubt it and I doubt they would let you get it on your own."
"You mean pay for it myself?"
"Yes, I doubt anyone would do it for you because there is no medical reason for it"
"You mean aside from the fact that I have MS"
(I'm kidding I didn't say that last part, but I WAS thinking it."
Ouch , it was UNcomfortable. At first I was a little embarrassed, but the more I thought about it, I was actually pretty pissed. I have no idea why I got the response I did. I felt attacked and it shook me up a little bit.
Anyway, I am not totally ruling this clinic out because,despite the last nurse's opinion, I still have not heard Dr. ____'s opinion. And, I DO believe that this Dr. will look into this and make an informed, well thought out,` assessment. (I hope.
) If that doesn't work then I'm not sure what I'll do next . PCP? Cardiovascular (something)? Stanford?
PS. Some of you may remember a post I made a while back in which I said that I had faxed a copy of Zamboni's paper to my neuro. Almost 2 weeks later and still no response. I am wondering if he a. threw it away b. lost it c. has been looking into it. I hope it's C.
PSS. My infusion nurses are very sweet. They may be looking into this post and I just wanted to give them a shout out. They are sweet and they make coming to get our meds as enjoyable as possible. You guys rock!!