This Is MS Multiple Sclerosis Knowledge & Support Community

I agree Mark, the semantics in CCSVI is a huge issue for many (like me at first) who do not truly understand they can challenge these meanings like "gold standard" especially when it is referred to as such over and over again in various places by various people.

This is a tricky discovery process that is unfolding before us as every day passes and as every new patient enters into the CCSVI arena and as every doctor out there begins their own discovery process.

I also agree that no one should become discouraged by a negative when there is no absolute way to diagnose CCSVI.

There are a rainbow of tests that can lead to a diagnosis but there are also any number of areas within the body that can have problems and the ability to find a needle in the haystack that are our bodies is problematic.

One negative test only tells us that a particular area scanned may or may not have a problem because the particular test used at the time may have a high probability of user error OR is just not sensitive enough to discover anything OR just not done with a high enough sensitivity setting at the time OR just happened to scan a area that happened to be near the problem but missed it entirely. ... ad infinitum

A negative test does not absolutely tell us that there is nothing within the body as a whole...how many veins do we have? How many places do these veins run within our bodies?

It is kind of like when they tell us we have MS and say there is no absolute test to diagnose absolutely.

Frustrating I know. The more I learn about this the more I understand the complexities involved and see there is still so much more to learn. I also realize there is so much more that requires significant patience and dogged persistence on all of our parts.

Should we stop using the phrase 'gold standard'? If it is more misleading than helpful.

I think many many people who are treated also have a stenosis that is missed. The azygous alone....

Couldn't have said it better myself. Very good synopsis. And just for the record, 365 days ago I had to look up "stent", "venography", "stenosis", IVUS wasn't even on the radar, reflux was just reflux but couldn't describe it if life depended on it, toss in MRV and egads, ultrasound but not just any ultrasound, and my cog fog head was taping up 3x5 cards just to try to keep it all straight. We are a lot further 1 year later than we were then but got a long long ways to go. I had envisioned this would be not necessarily textbook accepted but at least far more commonplace in the states than it is right now, but it's gaining steam fast, and by this time next year there will be many more floodgates opened now that it's really "out there" for all to see. Plus MS'ers are some very very smart cookies, all cognitive issues aside, that just slows down the processing speed but most doctors are amazed when you walk in and can start blabbing about all this stuff like it's second nature.

But that takes work, alot of questions and alot of reading and asking questions... I read threads on here everyday and still am amazed how little I really know...

All politics aside ala medical socities of whatever stripe and/or organizations, none of those are holding any of us back from educating ourselves, it's our most potent "weapon"...



Mark