Lib, I totally agree.
When I first learned about CCSVI, I was very intrigued. As I researched and learned more, I became excited. When I found it nearly impossible to get a treatment done, I became frustrated. When I read (and heard directly) misrepresentations about CCSVI from the community that is supposed to help us, I became angry. Now, I am simply determined.
For me, it's simple. If I have blockages in my veins that prevent proper blood flow to a major organ, I want it fixed. Period.
I am trying to get into the vascular department of a major medical institution here in the States while I wait for one of my other avenues to open up. I had a long talk with them and never mentioned MS. I said I had neuorlogical symptoms and a history of vascular disorders in my family (which is true; my father has had several blood clots and strokes). You know what they said? "We can do a MRV and take a look at your veins for possible stenosis."
My husband asked if I was trying to sneak in under the radar. I told him that the medical community can't have it both ways- if you are going to say that MS is autoimmune, period, then my vascular issues should be of no concern. Fix them!!!!
Three veins angioplastied. One renewed life.