Does MS cause CCSVI?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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gainsbourg
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Does MS cause CCSVI?

Post by gainsbourg »

I know this question was discussed on the recent "CCSVI and iron" thread but I'd be interested to hear the views of anyone who might have missed it.

Is CCSVI a symptom of MS rather than the cause?

Recent evidence suggests very strongly that MS is associated with blood flow problems in the brain - but it's easy to jump to the conclusion that CCSVI causes MS. Surely we should be considering the possibility that it might be the other way round.... that the blood flow problems come first and weak veins are exploited second (as a result of those blood flow problems).

The brain needs a massive and constant delivery of blood. Nerves of the CNS work hard and need to metabolize huge quantities of oxygen, iron and glucose every second - far more than anywhere else in the body. They need a constant supply of these nutrients to function properly.

Remember, MS is basically chronic inflammation of these nerves, and once inflamed, the delivery of blood must surely alter or be disrupted in some way or other. Maybe the body tries to compensate for the inflammation by delivering even more blood to help the sick nerves, or, perhaps blood flow is reduced, simply because it moves more slowly through inflamed tissue. Either way, it seems logical that chronic inflammation could be the cause of chronic blood flow changes. The unnatural flow then puts a strain on the venous drainage system and begins to exploit inherent weaknesses resulting in CCSVI and other venous problems. Then, once the veins are damaged, it compounds the whole problem.

The brain is designed to pump 1.5 pints of blood per minute back to the heart - even a slight change (more or less) over a long period of time, could start exploiting weaknesses.

I'm not doubting that many people (whether healthy or with MS) are born with a genetic predisposition to a whole range of vascular defects, it's just that I believe MS exploits these weaknesses - rather than jumping to the conclusion that MS is created by them.

If CCSVI is just a symptom of MS rather than the cause, it would explain so many things that have been bugging me:

It explains why MS doesn't always seem to be cured by fixing the veins (because the venous problems weren't causing the MS, it was the other way round).

It explains why the venous problems often come back so quickly after repair (because MS is the real cause of the venous problem - and MS hasn't gone away).

It explains why so many people have MS, yet show no signs of CCSVI (because MS isn't caused by CCSVI).

It explains why an increasing number of people are being found to have CCSVI but no MS (because MS isn't caused by CCSVI).

I'm a great believer in doing everything you can to help with MS symptoms - and if fixing veins temporarily helps with those symptoms then so be it for those who want to risk it. Blood flow to the inflamed nerves of the CNS is greatly improved, therefore easing MS symptoms. There are risks, but it's not as if other MS treatments, like steroids, are risk free. If it all works out - then we owe a lot to Zamboni, Simka (and people on this forum like Cheerleader) for leading the way with all this. However I can't agree with the assumption that MS is actually caused by CCSVI. For me, it's much more likely to be the other way round.



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Last edited by gainsbourg on Wed Oct 06, 2010 6:48 am, edited 3 times in total.
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Post by CCSVIhusband »

How exactly does a nerve problem (disease) cause problems in the veins? MS is a nerve problem, but I wouldn't even go so far as to cause it a disease, because prove to me one doctor who has ever PROVEN that it's a disease? What is the cause of this "disease" ... a virus? a bacteria? How have they never been detected then?

Your entire post was a waste of time to read because there is no proof behind any of it ... there is proof for it being the other way. (vein problems causing other problems - see May Thurner, Budd Chiari ...)

I hope my response is the only response to this thread, because all you're doing is spreading misinformation ... with the thoughts of one man (you) that nobody knows ...

Could you have a vein disease from birth? Yep ... there IS proof of that ... could THAT then cause other problems (YEP - proof of that too).

So thank you, but your OPINION ... is wrong.
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Post by Jugular »

The Saskatchewan MS clinic undertook a genetic study trying to identify the gene associated with MS. Of particular interest were cases where parent and child had MS. In those cases extended family members were asked to come in for blood tests. As I understand it, Dr. Knox's current study wants to look at whether there are venous malformations in these parent child cases to ascertain whether these malformations are primarily congenital, as Zamboni postulates.

If you have seen an MRV of the sort of malformations involved (as I have with my own) you would conclude that these would have been there from the start (during the period of foetus development when the neck veins are formed).

But you are right to raise this, since no study has been done to confirm Zamboni's hypothesis and this chicken and egg conundrum will have to be addressed. From a theoretical standpoint, as the other poster put perhaps a bit too forcefully, it is hard to describe how MS could cause these malformations.
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Nick
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Re: Does MS cause CCSVI?

Post by Nick »

gainsbourg wrote:I know this question was discussed ...

gainsbourg
gains

This is fascinating topic and Direct-MS has a good read on this issue. In the Advocacy page you will find CCSVI and Multiple Sclerosis: Integrating New Data to Help Guide Actions which uses what few statistics are available to address the relationship of MS and CCSVI.

Cheers
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gainsbourg
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Post by gainsbourg »

Thanks for all your comments.

Zamboni himself took this matter seriously enough to discuss the possibility in his 2008 study.

He reasoned that CCSVI couldn't be caused by MS - because those people who had never received MS drugs (to reduce inflammation or suppress the immune respose) would have more severe venous problems:

"If vessel abnormalities were due to an inflammatory-autoimmune disease, they would be less frequent in patients treated with immunomodulating/immunosuppressant agents. On the contrary, our analysis in the RR-SP group did not demonstrate an increased number of extracranial venous stenosing lesions in untreated as compared with treated patients"

http://jnnp.bmj.com/content/80/4/392.full

So by this logic, are we to believe that the venous problems should have started fixing themselves or cleared up completely once MS drugs were administered? Or even that when MS was allowed to continue without drug treatment, the CCSVI should have become progressively worse???

Did he not consider the possibility that the damage to the venous system in MS could easily reach its full extent years before any MS symptoms first appear, let alone before any drug treatment commences?

Zamboni's case for dismissing this whole possibilty seems pretty insubstantial to me. It reminds me of his original claim (since corrected) that only people with MS had CCSVI.


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Post by dreddk »

Gainsbourg, its a legitimate question to ask. Once correlation has been proven, causation will be the next issue to address.

I do tend to agree that the hypothesis that if correlation is proven, then CCSVI as a causal factor of MS is more likely than MS causing CCSVI.

I think perhaps the more interesting question will be how an important factor it is. The evidence of CCSVI in the general population suggest other factors are at play as well in the development of MS. Which of course then could raise the possibility that these other, perhaps genetic factors, also influence the development of CCSVI... which would spin your question again - perhaps the cause of MS also causes CCSVI....many questions to be answered.
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Post by Cece »

Jugular wrote:As I understand it, Dr. Knox's current study wants to look at whether there are venous malformations in these parent child cases to ascertain whether these malformations are primarily congenital, as Zamboni postulates.
Fascinating! So they've already got the blood draws, they just have to analyze it looking for vascular malformation genes?
concerned

Post by concerned »

CCSVIhusband wrote:How exactly does a nerve problem (disease) cause problems in the veins? MS is a nerve problem, but I wouldn't even go so far as to cause it a disease, because prove to me one doctor who has ever PROVEN that it's a disease? What is the cause of this "disease" ... a virus? a bacteria? How have they never been detected then?

Your entire post was a waste of time to read because there is no proof behind any of it ... there is proof for it being the other way. (vein problems causing other problems - see May Thurner, Budd Chiari ...)

I hope my response is the only response to this thread, because all you're doing is spreading misinformation ... with the thoughts of one man (you) that nobody knows ...

Could you have a vein disease from birth? Yep ... there IS proof of that ... could THAT then cause other problems (YEP - proof of that too).

So thank you, but your OPINION ... is wrong.
I think that's a little harsh for a perfectly legitimate question.
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Jugular
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Post by Jugular »

Cece wrote:
Jugular wrote:As I understand it, Dr. Knox's current study wants to look at whether there are venous malformations in these parent child cases to ascertain whether these malformations are primarily congenital, as Zamboni postulates.
Fascinating! So they've already got the blood draws, they just have to analyze it looking for vascular malformation genes?
Is there such a gene? Interesting idea. I think they were going to invite the parent child pairs to participate in the imaging study.
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Post by CCSVIhusband »

concerned wrote:
CCSVIhusband wrote:How exactly does a nerve problem (disease) cause problems in the veins? MS is a nerve problem, but I wouldn't even go so far as to cause it a disease, because prove to me one doctor who has ever PROVEN that it's a disease? What is the cause of this "disease" ... a virus? a bacteria? How have they never been detected then?

Your entire post was a waste of time to read because there is no proof behind any of it ... there is proof for it being the other way. (vein problems causing other problems - see May Thurner, Budd Chiari ...)

I hope my response is the only response to this thread, because all you're doing is spreading misinformation ... with the thoughts of one man (you) that nobody knows ...

Could you have a vein disease from birth? Yep ... there IS proof of that ... could THAT then cause other problems (YEP - proof of that too).

So thank you, but your OPINION ... is wrong.
I think that's a little harsh for a perfectly legitimate question.
You would ...
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Post by Lyon »

.
Last edited by Lyon on Sun Nov 20, 2011 5:02 pm, edited 1 time in total.
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CCSVIhusband
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Post by CCSVIhusband »

Lyon wrote:
CCSVIhusband wrote: I hope my response is the only response to this thread, because all you're doing is spreading misinformation ... with the thoughts of one man (you) that nobody knows ...
Hopefully everyone noticed that your post is humorous.....obviously intentional on your part.

While gainsbourg includes at least some attempt at substantiation even though he is clearly only brainstorming, you dog him for only providing his opinion while you brag about proof without providing any and most likely not having any.

We all got a kick out of it. You have a knack for humor.
I'm glad ... my wife is still doing great in her POST-CCSVI liberation world.

We're laughing every day at those (the remainder of your ilk) who continue to waste time letting your loved ones languish knowing their veins are stenosed ... and continue to blast and spread misinformation about CCSVI on this forum ... and only provide worthless posts that are meant to confuse and further nothing than get newbies who don't know your ways to question whether CCSVI and the benefits reaped when a person is liberated are real (THEY ARE ... I SEE THEM EVERY DAY ... So I'm glad we've had these 5 months now ... don't you wish you had the same 5 months??? - you should).

Great luck to everyone who is getting the procedure done though - we hope you get all the placebo you can handle. We love reading your stories ... :-) ... whether I post as much here any more or not, it's because we're enjoying the post-liberation world. I find about 8 people on this forum completely worthless and it seems their posts try to do exactly what I said above; confuse, hinder, mis/dis-inform, attack and about anything else negative. It's not worth my time anymore, now that we've been through a liberation ... YOU (Lyon and your ilk) are WRONG. I don't know how else to say it ... eventually everyone else will find out and then you guys will be the only ones left on here debating why you or your loved ones suffered for so long when you knew about CCSVI and could have had something done about it ... oh well, not my life, so I don't care.
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Post by ikulo »

concerned wrote:
CCSVIhusband wrote:How exactly does a nerve problem (disease) cause problems in the veins? MS is a nerve problem, but I wouldn't even go so far as to cause it a disease, because prove to me one doctor who has ever PROVEN that it's a disease? What is the cause of this "disease" ... a virus? a bacteria? How have they never been detected then?

Your entire post was a waste of time to read because there is no proof behind any of it ... there is proof for it being the other way. (vein problems causing other problems - see May Thurner, Budd Chiari ...)

I hope my response is the only response to this thread, because all you're doing is spreading misinformation ... with the thoughts of one man (you) that nobody knows ...

Could you have a vein disease from birth? Yep ... there IS proof of that ... could THAT then cause other problems (YEP - proof of that too).

So thank you, but your OPINION ... is wrong.
I think that's a little harsh for a perfectly legitimate question.
I agree.

husband, let's see a little more civility. Gains voiced some very legitimate concerns and for you to call his/her thoughts a waste of time is rude and childish.
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Re: Does MS cause CCSVI?

Post by Cece »

gainsbourg wrote:It explains why MS doesn't always seem to be cured by fixing the veins (because the venous problems weren't causing the MS, it was the other way round).

It explains why the venous problems often come back so quickly after repair (because MS is the real cause of the venous problem - and MS hasn't gone away).

It explains why so many people have MS, yet show no signs of CCSVI (because MS isn't caused by CCSVI).
Alternate explanation to #1 (in the CCSVI-causes-MS theory): MS is not cured by fixing the veins because some people with MS have permanent scar tissue in their brains and spinal cords. Fixing the veins may prevent more of this but it does not take away what has been done.

Alternate explanation for #2: Venous problems come back quickly because of elastic recoil and the response of the vein wall to grow, heal or scab after the injury that angioplasty does to the veins. Both of these are known to occur elsewhere in the body after angioplasty.

Alternate explanation for #3: This is simply not true. All the doctors treating clinically are finding nearly every person with MS has CCSVI.

Jugular, thanks for explaining what they are doing in that study. Yes, there is a gene for vascular malformations; there was research presented back in April that tied this gene to people with MS. It's posted here somewhere, it has big implications as far as I understand it.
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Post by Sotiris »

Antother argument from Prof. Simka's presentatiom (see http://www.thisisms.com/ftopic-14006-6.html):
Is CCSVI a product of MS?
no correlation existed between duration of MS and severity of CCSVI
This may mean that CCSVI is not a product of MS
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