This Is MS Multiple Sclerosis Community: Knowledge & Support

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-

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Well done Cheer!!
marie

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Thanks Cheer - that's great!! ; 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.

See - the Italians know that Zamboni is on the right bus - they've already named their main street after him!!

Phil

Thanks, Phil and Marie-
and in the spirit of full disclosure, let me say that I'm not a doctor.... by far! My husband and I are professional musicians, we do not own any stock in pharmaceutical companies (that I know of!) we do not work for any medical corporations, and we do not receive money for all the time and research of CCSVI. Apparently, I'm just a nut!

We're also a couple of human beings who have been profoundly affected by MS. Jeff found immediate relief from the opening his 2 closed jugulars with a stent procedure and is getting better all the time. He played his first live jazz gig in over 2 years (since his first flare and diagnosis) last night! He is so excited to have the energy and stamina to go out at night and make music again...we are so thankful to Dr. Dake and Stanford for giving him this opportunity.

We make no promises, but encourage folks to learn more.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

So what sort of 'nut' are you, Cheer?

I notice that there are a few peanuts on this site, lately - but you're certainly not one of those!

You seem more your attractive hazel nut variety to me. Of course, brazil nuts are fairly popular with MSers, too.

Phil

I have presented the CCSVI research to four neuros. They all asked the same question, "but how does this all cause the damage in the brain / immune attacks"

I presented Dr Simka's original theories, and I think with the work Dr Haake is performing, something should be acceptable to them, to include in the above list.

Do we have a link to Dr. Simka's explanation? I remember seeing it once but can't seem to find it again...

Go to the research sticky at the top of the page but click page ONE....then go to the second post. I keep that up to date with any new research.

Dr Simka's Monaco presentation is on there as well as Dr Singh and Zamboni's paper on iron deposits and immune activation from that.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Hi cheer,

I`m deeply impressed by your never ending work and the stringent argumentation of your posts. Thank you so much.
Let`s hope, that Zamboni will ( if so) share his Nobel price with you....
One interesting question of my wife: did you ever seena study, that links ms with date of birth resp. with the time of early pregnancy (when the trouble starts with these venous malformations)? Virus infections, Vitamine D deficiency and maybe other factors change within a year, and she thinks, if there would be a significant difference of the incidence of ms in relation to certain times of birthdates, that could help to understand, why babies are born with tendency to develop ms.

Hope to tell you soon about progress of the medical world in my country.

lobra

Hey Lobra-
Good to hear from you- I hope your wife is well. I don't deserve any praise...seriously. Dr. Zamboni and his team have done years and years of research and found this. I'm just one of many "translators" on here and the internet. We just want to get the word out to patients and doctors.

I had a great time meeting all the doctors at the conference in Bologna. If you didn't read my notes yet (they got buried quickly!) here they are:
http://www.thisisms.com/ftopict-8105.html

Dr. B.B. Lee spoke at length as to "truncular venous malformations" and how they are formed in utero- here are some of my notes from his presentation:



Perhaps there are connections between a mother's intake of vitamin D and TVMs? Perhaps conception month? Dr. Lee did say that TVMs occur in Caucasians...rare in Asian and African populations. This is why he believes CCSVI is congenital.
more questions to answer...
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Also, just for TIMS members FYI, I linked Cheer's notes from Bologna on the research page right at the top so we have them readily available as people will want to refer to them..............

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Thanks, Marie-
hadn't seen that, but appreciate the links! I lost the typed up notes when my hard drive crashed, so it's nice to have them here
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Is this the discussion you were referring to?
http://www.thisisms.com/ftopicp-65847-.html#65847

NHE

Brilliant.

Thanks. Great news about Jeff.