cheerleader wrote:Sorry it's taking awhile, Marc. I'm sure there's a logical explanation...but that doesn't make the waiting any easier.
I had a good talk with Dr. Dake in Bologna about all of this. He thinks it's going to take a very long time for the medical community to adjust to this paradigm shift and to seriously consider jugular/azygos stenosis part of the MS process. Not that folks are incredulous....just that the research and clinical trials needed to convince doctors this is verifiable really aren't there yet.
CCSVI makes sense to us, the caretakers and patients, but Dake reminded me that's not how medicine evolves. I just assumed that doctors would jump up and down and want to study CCSVI and be as excited as I was (and Dr. Dake was) when we saw Jeff's MRV, and his subsequent improvement after stents. But they're not. And for folks who would like some answers, it's incredibly frustrating.
Anyhoo...I hope you hear something soon, and thanks for sharing the update with us.
Couldn't agree more on the realistic nature of your post. Marginialization, and cult-status are the order of the day, for now. This would never have happened pre-internet, at least not in it's present form. It's unique in that it is truly patient driven from the outset, save our Italian friends. The way I see it, there are ONLY about 400,000 (surely more) MS patients in the US. This thread/board and it's copious references and testimonies has certainly reached into the 1,000's and is growing daily. The weight of ALL participants is needed or that inertia will be lost. For us MS sufferers that clearly understood the risk, and were willing to endure such risk, for the sake of relief and to further the cause, there's a lot at stake both pro and con.
Grassroots are all the rage now, but we aren't carrying signs, just our bodies.
Since we know that high science is going to do what it does best, change, in as slow and methodical a fashion as is humanly possible, there remains just one option, to continue pressing on and encourage others to do just that, should they also find the weight of ALL the evidence pointing in a certain direction.
Since not even lesion load +/- will distinctly "prove" anything, hopefully at some point the SWI will be used pre-op and post-op to show iron accumulation or lack thereof.