Getting the testing seems so easy. But do you want testing from someone who doesn't really know how to do it properly ? Dr Simka and Dr Zamboni and the people at BNAC know how to do the testing. But aside from Dr Dake, I don't know anyone else who I would trust to test me properly. What we need is more people trained with the doppler protocol and more sites using Dr Haacke's MS-MRI protocol. Dr Haacke is asking for sites to collaborate with him. Maybe you could ask your PCP or neuro how you could expedite getting the training and the protocol for the tests near you.
Yes, we keep going around in circles back to the same thing as 6 months ago, we need more sites and trained people. Here we are back to the double-edged sword, lots of clamoring, little qualification to do anything about it. The noise right now pales in comparison to when the CBS piece comes out, and even MORE people will join the clamor armed with a thimbleful of information.
With little direction left on this site, the de facto source of all things CCSVI, and no "CCSVI for Dummies", the coming days are simply going to be more of the same. Then the NMSS will come out with another "more research is needed we are looking into it" statement, PWMS will flood the internet and desperately look to see "what everyone else is doing", and find out there are 3 or 4 lists they can try to get on, (if they make it that far) with hundreds if not thousands on those lists already, and not much else. They won't KNOW what an interventional radiologist is, or what the heck an MRV is, or why they need it in the first place, or even understand much more than "veins are screwed up or something like that".
Considering the hundreds and hundreds of people posting responses on Facebook, one shudders to think what adding to the frenzy is going to do. Well there's not much shuddering, but if the last couple months are any indication. How can we expect people to "approach universities and hospitals" and argue complex concepts and protocols, at the drop of a hat? Let alone MSer's with cognitive issues, short term memory loss, and fatigue? Just saying, "well I did it why can't you" is displaying an inherent lack of understanding towards our fellow MSers, and downright insulting. Maybe they CAN'T do that.
I sure do appreciate the caregivers that are in here though, advocating, fighting, pursuing, but they are the exception, not the norm. It might not seem that way, seeing that everyone HERE gets it, at a minimum, but multiplying our efforts is the ONLY way this is going to work, and having a select few with the "goods" is not good enough. It takes TIME to educate people, and patience, and persistence, not "link dumping".
"Well what we should do is..." How many times are we going to hear that?
That's meant more in a "reality check" sense than a negativity dump, just to be clear. Clear a path cause the freight train's coming through.