Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby cheerleader » Sat Dec 27, 2008 11:40 am

CureOrBust wrote:Any ideas on how it explains the Faroe Islands

The straw that broke the endothelium's back. The Faroese had genetic predisposition (Irish, Norse) low vitamin D, and THEN the introduction of the viral component (those darn Brits and their randy ways.) I really believe it takes many combined forces to create MS. It is overwhelmed blood which becomes hypercoaguable and stenoses prone. If what we call MS is really just the assault of the central nervous system by venous back flow... it doesn't really matter what equation of variables created the stenoses. Get rid of them, get the blood moving, heal the BBB.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat Dec 27, 2008 11:51 am

Hi CUr-o
Yes I believe the graphic is perfect!!! LOL!

I think the operative word in that abstract is ARTERY.... in that case the patients had an artery that was problematic and which was directly ischemic to an area of the brain, meaning the oxygen was not delivered and the tissue died because of that.

Ischemia is not the main issue with venous insufficiency because veins take the blood back to the heart after it is already de-oxygenated to be re delivered to the lungs for a new load of O2. If the veins are not getting stuff back, there is pooling of the blood, inflammation, swelling is often obvious (think ankles of pregnant or old people).

The arterial problems they were addressing in the abstract would have resulted in a different inury, the blood was not getting there in the first place so the area of the brain was deprived of oxygen, what the Schelling/Zamboni theory is is that venous pooling is causing damage with different mechanisms for injury like iron deposits and direct mechanical injury.

Here's the BIG BONUS of that arterial study;
experienced partial restoration of lost neurologic function

That may well apply to us also!

As for the Faroe Islands, I remain convinced that there is a germ angle to this. I can't help but remember that many people all over the world have found chlamydia pneumoniae in MS brains, CPn is a vascular germ, and it colonizes any area that infected blood cells can get to. CPn has been repeatedly found in atherosclerotic plaques of the arteries and is involved in narrowing of those arteries. While in general people worry more about arterial flow and the studies are mostly in that field, it is possible that the strictures they have found in the jugular vein will turn out to have the same kind of plaques with CPn in them as well. Such an idea is entirely speculative of course, but not unreasonable.

I am really glad for Dignan and Cheer for bringing this to the forefront. I am really glad to have this to work with NOW. I hope I can find a good vascular person to help!
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Postby kathyOP » Sat Dec 27, 2008 1:58 pm

I am in the midst of defeating a number of hard blows - and since they did not respond to steriods I was in the hospital to receive plasma exchange. During the process I developed a large clot in my jugulag vein! I am being teated with Lovenox - it is a anti-coagulant - subQ injection 2x a day, the hemotologist says it is also an antimmflamatory.

This entire posting is making things click! Thank you so much for this puzzle piece.
Kathy
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Postby Lyon » Sat Dec 27, 2008 4:21 pm

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I like this author!

Postby lyndacarol » Sat Dec 27, 2008 5:08 pm

Good post, Lyon!

I like this author!--
Jock Murray, professor.

Dalhousie University, Sir Charles Tupper Medical Building, 5849 University Avenue, Halifax NS, Canada B3H 4H7


For more reading: Multiple Sclerosis--The History of a Disease by T. Jock Murray, OC, MD.
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Postby Lyon » Sat Dec 27, 2008 5:30 pm

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Postby cheerleader » Sat Dec 27, 2008 5:56 pm

Thanks, Bob-
I'd love to get Jock Murray's take on Zamboni's recent find.

But just as a workable and testable theory has evolved, important work by an international group implies potentially four pathological patterns of multiple sclerosis.7 So we must add to the quandary the possibility that we may be dealing with different disorders with different causes. No one ever said medicine was simple.

Zamboni found a correlation with the area affected by stenoses, and the "type" of MS. Blockage in the jugular veins correlated with RRMS, while more progressive PPMS and SPMS was related to blockage on the azygous vein. But all MS patients showed venous blockage....which is actually rather "simple". I've been e-mailing a vascular professor at Stanford who is interested in seeing if his dept. can replicate Zamboni's study.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sat Dec 27, 2008 6:46 pm

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Postby CureOrBust » Sun Dec 28, 2008 5:30 am

cheerleader wrote:I'd love to get Jock Murray's take on Zamboni's recent find.
I am not going to ask my neurologist for his "take on this", until after I have my personal results. These holidays are the first time I have been itching for the work weeks / time to start up again so I can get this sorted/finalised, one way or the other.

cheerleader wrote:But all MS patients showed venous blockage...
Lets be absolutely clear here. All CDMS patients had at least 2 out of the 5.

Zamboni wrote:SELECTIVE VENOGRAPHY
Selective venography demonstrated that the detection of at least 2/5 TCCSECD criteria of suspected anomalous extracranial venous outflow (which never occurred in the control populations) was always related to multiple significant extracranial venous stenosis, localized at the cervical, thoracic, and less commonly abdominal level, of the principal cerebrospinal venous segments.

And the other thing I just realised from this paragraph, even though some of the controls (some of the ones earmarked for possible venous issues prior) did "fail" one of the non-invasive Doppler criteria NONE appear to have failed TWO (or more, like ALL the MS patients did)
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Postby cheerleader » Sun Dec 28, 2008 10:55 am

Thanks for keeping me honest, Cure-
but the 2/5 conditions met was "always related to multiple significant extracranial venous stenosis" in MS patients. That's what is mind blowing to me.
And thanks for the e-mail for Jock, Bob. I may send this study along to him in the near future. The people most receptive to Zamboni's work seem to be vascular docs (his field, no surprise) because they understand the importance of detecting venous outflow irregularities. The doc I've been e-mailing has been in contact over the holidays, and will present the study to his colleagues after the new year. He says his group is used to thinking "outside the box." I agree Cure, I can't wait for the work week to return...very unusual!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sun Dec 28, 2008 2:28 pm

the 2/5 conditions met was "always related to multiple significant extracranial venous stenosis" in MS patients. That's what is mind blowing to me.


For me too. The Murray quote above only causes me to think that for the truly thinking person who looks at the breadth and depth of MS research, MS is actually wide open. In contrast to that, I once took the Prineas and Barnett paper to my neuro to read as he claimed not to have seen it and his comment was that he did not think anyone seriously considered MS could be anything other then autoimmune.

At the time they were setting up to give tysabri in the clinic where they already administered novantrone and getting ready to start a tovaxin trial. I had some sympathy for him; he was terribly busy and honestly did not have time to condsider or think about other ideas. I suspect he could not commit to the drugs he was giving or to the trials if he was totally open to other hypotheses as cause of MS. How could you give something that causes heart damage relatively often if you were not sure in your own mind that MS was autoimmune?

It made me think maybe we as patients need to accept the possibility of cognitive dissonance in our neurology community, meaning that when faced with research that counters the belief system, it is seen as lacking authority and as obviously "wrong" not because it is wrong, but because it counters the belief already held. The consequences to accepting that MS might be something other than autoimmune are really quite far reaching for them if you think about it.

This struck me as really sad and left me understanding I really am on my own. It was that moment when he rejected Prineas as inconsequential that sent me to thinking "it is NOT his disease, he cares as much as he can given all he has to do, the politics of his situation, and the enertia of the current dogma, but really it comes down to me....I have to figure it out as best I can....and I do not think there is enough here to support killing immunity even though he wants me to do novantrone.; and more ominously, even though I'm losing this battle"

That was hard to face. I'd rather they tell me what to do and I am tired of trying stuff that does not pan out as I hope. I feel I can hope this one works because it is so novel; I couldn't get my hopes up for "more of the same". But this has me jazzed! Good luck to all of us!

These holidays are the first time I have been itching for the work weeks / time to start up again so I can get this sorted/finalised, one way or the other

Man, Cur-o me too! :D

I keep checking this thread as if something might have happened...like in the last 20 minutes................. :oops:
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Postby Wonderfulworld » Sun Dec 28, 2008 4:24 pm

Well said MrRhodes.
Think of the paradigm shift that had to happen in conventional medicine that moved ulcers from being a stress related disease treated with bland low-fibre foods, to one that treats ulcers as a bacterial infection that can be treated easily with antibiotics.
A similar negativity and disbelief greeted the idea that ulcers could be a bacterial infection.
MS IS wide open, you're right. I still feel maybe the Cochrane review of ABCR's is correct and efficacy matches placebo level....although I'm on one just in case.
Let's hope the right powers that be are open to listening. So much money rides on the autoimmune approach but so many lives ride on the hope for something that WORKS for MS.
I keep checking back too, once a day......
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Postby mrhodes40 » Sun Dec 28, 2008 5:21 pm

still feel maybe the Cochrane review of ABCR's is correct and efficacy matches placebo level....although I'm on one just in case.


Me too.

I also take abx because they have helped me in some important ways. I believe germs do play a role.
marie
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Postby rainer » Sun Dec 28, 2008 8:58 pm

cheerleader wrote:And thanks for the e-mail for Jock, Bob. I may send this study along to him in the near future.


I will do this if you don't. :)
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Postby cheerleader » Mon Dec 29, 2008 10:26 am

Writing and sending today, rainer.
This article sealed the deal for me....
The endMS campaign in Canada-
That’s why the society recently launched a fundraising campaign called endMS, which aims to bring in $60 million in the next three to five years ($11 million has already been raised). The money would fund new studies and recruit new people to a field in which the number of researchers has been declining.
Campaign organizers are hoping undergraduate university students will be among those bright young minds helping to find a cure. A scholarship named after Dr. Jock Murray, a retired Halifax MS research pioneer, could lure them to the cause with $100,000 in research money up for grabs.


http://thechronicleherald.ca/ArtsLife/1098184.html


edited 2 hours later...sent. Hope the e-mail still works, since Murray is retired, and it's a univeristy address. We'll see. AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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