Talking points for dubious docs (and others!)
Posted: Sat Sep 19, 2009 2:41 pm
This has gotten some good response on the Facebook CCSVI in Multiple Sclerosis page, and I wanted to share it here (seems apropos!)
When bringing CCSVI research to your neurologist or physician, be prepared for the following comments:
(remember, your responses are given with a smile....no need for hostility. We want to get more doctors to look into the research.)
1. You can't believe everything you read on the internet!
A. The research has been published in medical journals and was available on PubMed. Here...I have a packet of the research for you (now pull out the neatly organized stack of research papers)
2. The vascular connection to MS has already been tested and proven false back in the 1950s.
A. You're right! But doctors were trying to treat MS with blood thinners, and that would not have solved the problem of venous stenosis. There would still be blockage and reflux. The technology to see actual blockage in the veins is very new, so finding venous blockage wasn't possible in the 1950s. No one has ever studied the jugular veins in relation to brain health before. But, thankfully, it is possible today!
3. This is Italian research....we don't do things this way in America.
A. Actually, American universities such as Stanford are looking at CCSVI in MS. At a recent conference on CCSVI, there were doctors from Harvard, Georgetown, Southwestern, including neurologists Dr. Eliott Frohman and Dr. Patricia Coyle. And Jacobs Neurological Institute at SUNY Buffalo has been working with the Italian researchers for 2 years now.
4. MS is autoimmune, it has nothing to do with the vascular system.
A. Then why hasn't an antigenic target ever been found? What is causing the immune system to activate? Could it be that the immune system is going in to clean up the damage from axonal and tissue death...just like the immune system does in hypoxia and stroke? Oligoclonal bands are found in the cerebral spinal fluid of stroke victims, but you wouldn't tell them they had an autoimmune disease, right?
5. Immune modulating medications work....there's your proof MS is autoimmune!
A. Yes, the medications work by making relapses slow down, and they work for about 30% of MS patients, mostly the newly diagnosed and those with RRMS..but they don't stop the disease process as shown on SWI (susceptibility-weighted)- MRI, and they don't work at all for progressive patients. I suppose if the immune system is over-reacting to damage in the central nervous system, it might work to stop the immune system, but doesn't it make more sense to stop the cause of the damage?
6. Zamboni? That's a funny name...like the ice machine!*
A. Yes, also like the name of the street which runs thru Europe's oldest university, the University of Bologna, founded in 1088. Zamboni is a common surname for scholars, professors and priests and many Italian families.
(*The Italians got a laugh out of the hang up on the name Zamboni. They know it in relation to Via Zamboni in Bologna...the center of the first university in Europe. They thought it was ironic that was what people were focusing on, instead of the research....)
If anyone has had any other interesting comments from their neuros and others regarding CCSVI- please feel free to share them here-
When bringing CCSVI research to your neurologist or physician, be prepared for the following comments:
(remember, your responses are given with a smile....no need for hostility. We want to get more doctors to look into the research.)
1. You can't believe everything you read on the internet!
A. The research has been published in medical journals and was available on PubMed. Here...I have a packet of the research for you (now pull out the neatly organized stack of research papers)
2. The vascular connection to MS has already been tested and proven false back in the 1950s.
A. You're right! But doctors were trying to treat MS with blood thinners, and that would not have solved the problem of venous stenosis. There would still be blockage and reflux. The technology to see actual blockage in the veins is very new, so finding venous blockage wasn't possible in the 1950s. No one has ever studied the jugular veins in relation to brain health before. But, thankfully, it is possible today!
3. This is Italian research....we don't do things this way in America.
A. Actually, American universities such as Stanford are looking at CCSVI in MS. At a recent conference on CCSVI, there were doctors from Harvard, Georgetown, Southwestern, including neurologists Dr. Eliott Frohman and Dr. Patricia Coyle. And Jacobs Neurological Institute at SUNY Buffalo has been working with the Italian researchers for 2 years now.
4. MS is autoimmune, it has nothing to do with the vascular system.
A. Then why hasn't an antigenic target ever been found? What is causing the immune system to activate? Could it be that the immune system is going in to clean up the damage from axonal and tissue death...just like the immune system does in hypoxia and stroke? Oligoclonal bands are found in the cerebral spinal fluid of stroke victims, but you wouldn't tell them they had an autoimmune disease, right?
5. Immune modulating medications work....there's your proof MS is autoimmune!
A. Yes, the medications work by making relapses slow down, and they work for about 30% of MS patients, mostly the newly diagnosed and those with RRMS..but they don't stop the disease process as shown on SWI (susceptibility-weighted)- MRI, and they don't work at all for progressive patients. I suppose if the immune system is over-reacting to damage in the central nervous system, it might work to stop the immune system, but doesn't it make more sense to stop the cause of the damage?
6. Zamboni? That's a funny name...like the ice machine!*
A. Yes, also like the name of the street which runs thru Europe's oldest university, the University of Bologna, founded in 1088. Zamboni is a common surname for scholars, professors and priests and many Italian families.
(*The Italians got a laugh out of the hang up on the name Zamboni. They know it in relation to Via Zamboni in Bologna...the center of the first university in Europe. They thought it was ironic that was what people were focusing on, instead of the research....)
If anyone has had any other interesting comments from their neuros and others regarding CCSVI- please feel free to share them here-
; but hopefully in the future, doctors will be doing their own research on subjects such as CCSVI and MS. I think most of us are getting a little peeved at paying to educate/entertain our doctors. 
- but you're certainly not one of those!