What has your neuro said to you about CCSVI?

[panic01]

I was wondering when the CCSVI story broke out, if you went to your Neurologist and asked them about it and what did they say?

I have 4 neurologists working together to diagnose me and when I bring up CCSVI  all 4 of them stop me in my tracks, and tell me not to even think about it. A friend of mine who has one of the same neurologists as me told me our Doctor said the Dr. Zamboni story was a hoax, although I have yet to ask this neuro about it because he told me from looking at my MRi I do not have blocked veins. I am pretty sure you cannot tell just from an MRi from what I understand. I have had poor circulation my entire life......contricted veins? or MS symptoms my entire life? I don't know the answers to those questions but I want hope for the future of MS and other auto-immune disorders.

So has anyone else run into this with your doctors?
I just do not understand why neurologists/MS specialists are so against it.
Also want to know if the Dr.Zamboni hoax story has travelled outside of ontario.

[twopack]

It did come up in my initial consultation at the MS Clinic.  Dr. C didn't completely dismiss the research.  He wasn't very enthusiastic either.  Of course, I'm not sure what it takes to light a fire under him just yet.  I think I remember him saying something about Buffalo now having no choice but to investigate the claim.

He seemed MUCH more convinced that we will eventually learn that MS is several different diseases rather than just one.  At the very least, he seemed sure there will be more than one contributiong factor that triggers MS development.

Mary

[essdipity]

I don't think anything should be inferred if a neuro does not want to comment on this subject, or is not enthusiastic.

Doctors are trained to put their faith in science. CCSVI is still a theory, even if it's a very interesting one. It has not been proven in any scientifically valid way, and doctors will not jump on the bandwagon till it has. They are actually supposed to be skeptical. That's good. It's the only way we get valid new knowledge.

I do believe that if and when it CCSVI pans out, neuros will be as enthusiastic as their patients.

ess

[Lulu54]

Hi Panic,
Change can be painful, as we know.  And that could very well apply to all of our MS specialists who have invested their entire career into treat MS as an autoimmune disease.

When the CCSVI idea went viral on the web, these neuro's could no longer ignore that perhaps they have been pursuing the wrong explanation for this MiSerable disease.  The outcry from the MS community has helped to push this research forward.

To label it a hoax is a bit extreme.  Perhaps the worst that can be said right now is the initial work by Zamboni is sloppy science.  He was motivated by wanting to cure his wife, and cut some of the corners that researchers follow to document their work.  now the organizations who are doing studies into the CCSVI theory are backtracking and doing the ground work.

I would hope that the people you see aren't really against it, but instead are just not wanting to get on the CCSVI train right now.  If the research proves out that these blockages do contribute to MS is some way, they will have no choice but to accept those findings.

There are some people who believe the resistance has to do with greed, and the influence of the big pharmaceutical companies.  The Pollyanna in me absolutely refuses to think that anyone who treats MS patients won't be overwhelmed with joy when the cause and cure are finally confirmed - whatever that may be.  

Yes, the DMD's are a cash cow for the mfgs. of these drugs, but they have reaped financial rewards for a long time.  There are always other diseases they can pursue once MS is mastered.

There is a researcher working on the CCSVI project in Hamilton, Ontario (I believe!) - you are sitting in a hot spot where I'm sure there is lots of chatter going on between these doctors about this.  

I mentioned CCSVI in an email to my neuro, in a lighthearted way, and he didn't even respond to the comment  I made.  I'm willing to be patient and wait for the clinical studies to be done before I push the discussion with my own MS doc.

be well,
Lulu

my two cents,
Lulu