I believe there are at least a few thousand of us in the same boat you are describing - and a few hundred thousand other Americans with MS who have not even heard of CCSVI.
Yes, we have signed up to pay $4500 out of pocket for my wife to be tested in Buffalo. We did that on the day that the newsletter came out announcing the availability of testing.
We also signed up for the studies with Dr. Mehta in Albany, and Dr. Laredo at Georgetown.
Also, we have been talking to local doctors about CCSVI, including our family doctor, my wife's neurologist, and three different radiologists. One is a guy who treats strokes and aneurysms who said it is no big deal to him to do angioplasty and/or stents in the jugular veins. He said those procedures would come with a large price tag (tens of thousands) and most of the money would go to the hospital, not the surgeon. So, he says to work with our GP and insurance company to find a way to have it covered by insurance. This I think is one key reason to get tested - to be able to show a defect that requires treatment for insurance purposes.
The other key reason is the time element. If your wife's MS is stable, and not progressing, the best course might be to wait for the studies to wrap up, and the treatment to become mainstream medical practice. In our case, with her MS symptoms becoming more severe in recent years, it seems more prudent to accelerate the process, even if it means more out of pocket expense, and a lot more uncertainty about where the treatment will come from, and whether it will be safe and effective.
These are not easy decisions to make, and I am glad we have a forum where we can bounce ideas off of others in the same boat!