Okay, so I have emailed all the doctors I can - Dr. Sclafani in New York and Dr. Vogl in Germany have replied.
Neither seems to understand that I live so far away. Dr. Vogl's reply was:
we could arrange for a date for a contrast MR venogram here and then discuss the findings
Yay. That helps alot. And with Dr. Sclafani I need to have:
"1. Most recent brain MRI with and without Contrast should be no more than three months old and done with MS protocols (http://www.ms-mri.com/potential.php
) and Susceptibility Weighted Imaging. We tend to prefer to do an MRV here but sometimes if your insurance is more likely to cover it if done in network we will work with you."
Well, I have only had one MRI done and that was ten years ago, without contrast. I have repeatedly asked my neurologist here at the MS Clinic for another MRI to be preformed and he has always replied that it isn't neccessary, I already have my diagnosis so it would be pointless to do it again.
I am feeling really frustrated and need to vent about this whole CCSVI thing. It sounds like Dr. Simka in Poland is the only one that is saying "show up and we will do all the tests and the procedure if needed"......
Is that a correct assumption I have? Who in Canada has gone and how did you do it??? I live in BC...apparently the "wrong" coast when dealing with Europe...lol...