This is going to be long, so if you're sick of me...please just skip.
You know....after pondering this, I just think it comes down to "tone." -Of course, I'm a musician, so that makes sense.
We can disagree respectfully, without being patronizing or sarcastic.
Not that there is any possible way CCSVI could be the "cause" of MS, but it seemed opportune that I was reading your post as my wife called from the top of the Blue Water Bridge...etc.
To me, the tone of Bob's post was unnecessarily provoking and sarcastic. But that may just be my "opinion." Why is it necessary to begin the sentence with not that there is any possible way? As though I must be a moron to believe such a thing...and I was not alone in being offended by that wording.
We all try to be respectful, but no one likes being lectured to or told they are foolish, or wrong, or naive. I've been on here for 2 years and have suffered some slings and arrows, and stepped away from the boards for a cool down period. But in the end, I realized that it was more important to pursue healing and hope. So I come back. That's my "tone." I mean, c'mon, I came on here as "cheerleader"...(more like Bambi in headlights back then) but I always tried to be hopeful, and encouraging to others looking for healing...no matter what their path was.
We're not doctors or scientists here (with a few exceptions). We're patients, and those who love patients. So, of course, sometimes we will write in a more "emotional tone." The current argument over "cause" of MS is really just about semantics. Do I "know" if CCSVI is the "cause" of MS...welp, no...no one does yet. Do I "think" that CCSVI is the "cause" of MS. Yup. But that's my subjective view, based in the science we have so far. Do I get rankled if someone questions my intelligence or sincerity? Sure, I do. I'm human, and I'm fighting as hard as I can for my husband and son.
When I first began posting about the connection to the vascular system and MS...well, let's just say the response wasn't too terrific. (I was lectured by Bob that MS couldn't be related to the vascular system, it had been studied, and there was no connection.) So I posted my endothelial program on the regimens page, because I noticed that Jeff was doing well on vasodilators and that most alternative MS treatments were vasodilators. When dignan posted the Zamboni in December....my heart leapt. Because here was a doctor who had found a tangible connection. And look how far we've come in only SIX MONTHS!!!!! Today, tysabri admitted a 10th patient has PML. And yet the folks going to Stanford to deal with their CCSVI are seen as a bit crazy...I'm sorry...is the established MS protocol less crazy? We sat in Dr. Dake's office and he looked at the image of Jeff's jugs and back to us. "That is not a good situation for your brain." he said. "But, the good news, is I can fix that."
If we want to squabble over semantics, fine. But I challenge everyone reading this to FIND SOME ANSWERS! If a singing housewife in California-(who was foolish enough to pursue the vascular connection against the warnings of more learned men)- can get some doctors together, than surely ANYONE can go out there and knock on some doors, raise some money for research, read pub med, try some new supplements, attempt physical therapy, say a prayer, encourage someone....
"not that there is any possible way" I'm ever giving up,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS