This Is MS Multiple Sclerosis Knowledge & Support Community

Lyon wrote:You're an adult. I can't think of anyone who has spent more time researching this, it's your decision and no one else's to make or even critique.

I researched it for the month of January and started actively seeking treatment at the beginning of February! That was pretty quick, all things considered.

Granted, since then, there have been delays and detours and irbs. ;)

With all due respect trying to discuss causation is difficult here as many believers appear to debate it with almost religious perspective.

The balance of evidence thus far is that ccsvi does to cause ms. Until a better study proves otherwise this is the state of play.

I get where Cece is coming from with regard to the disparity of percentages in the individual research studies.

As these studies were all performed independently and via a number of different protocols (MRV, Doppler, venogram, a combination thereof, etc.), there are too many variables to achieve consistent results from one study to the next- but here is what is consistent- the studies indicate a higher incidence of CCSVI in MS patients than in the control group.

To me, if there is a higher incidence of 40% or 90%, it's irrelevant. There is a higher incidence of CCSVI with MS.

Please read Dr. Sclafani's rebuttal to the Doepp study. He is right on target.

BooBear wrote:I get where Cece is coming from with regard to the disparity of percentages in the individual research studies.

As these studies were all performed independently and via a number of different protocols (MRV, Doppler, venogram, a combination thereof, etc.), there are too many variables to achieve consistent results from one study to the next- but here is what is consistent- the studies indicate a higher incidence of CCSVI in MS patients than in the control group.

To me, if there is a higher incidence of 40% or 90%, it's irrelevant. There is a higher incidence of CCSVI with MS.

Please read Dr. Sclafani's rebuttal to the Doepp study. He is right on target.

Exactly what I was saying Boo ...

I was wrong in saying they didn't go into the veins in the Doepp study (I meant they didn't treat ... to me that's the same, why know you have vein issues if they aren't going to be treated) ... it was a misqoute, the use of the wrong word, Oh well. What's important is all these studies show that CCSVI and MS are highly correlated ... and it happens (anecdotally mind you but that's still a study in and of itself right) in people with CIS, Transverse Meyelitis, RRMS, SPMS, PPMS ... and for the most part, they're correctable to some manner. THAT IS WHAT IS IMPORTANT.

BooBear wrote:I get where Cece is coming from with regard to the disparity of percentages in the individual research studies.

As these studies were all performed independently and via a number of different protocols (MRV, Doppler, venogram, a combination thereof, etc.), there are too many variables to achieve consistent results from one study to the next- but here is what is consistent- the studies indicate a higher incidence of CCSVI in MS patients than in the control group.

To me, if there is a higher incidence of 40% or 90%, it's irrelevant. There is a higher incidence of CCSVI with MS.

Please read Dr. Sclafani's rebuttal to the Doepp study. He is right on target.

Thanks, BooBear, you've said it better than I did or could.

CCSVI the majority of times has is formed in the womb...

There are documented cases of people having only one IJV and they have MS.

That combined with a high iron diet are the root causes of MS.

so how about this: MS causes ccsvi. ???would it help to clear the ccsvi then?

ccsvi causes ms. When cleared will there still be attacks?

Billmeik wrote:so how about this: MS causes ccsvi. ???would it help to clear the ccsvi then?

ccsvi causes ms. When cleared will there still be attacks?

Good question Billmek. The chicken or the egg, right? It sems everyone on this site has their own idea of what causes MS. The list so far is; diet, excess iron, venuous blockages, venuous reflux, screwed up spine, lack of Vitamin D, and even gravity. I am sure there are some new ones but I have not really been on here to much lately so i am not sure what claims people are making. How anyone would know that CCSVI forms in the womb is beyond me.

I think people who study embryonic development have a lot of tools at their disposal. Other animals than humans can give an idea how mammals in general develop.
Bifurcation is the thang. When a cellular pathway forks and becomes two. Why that happens and when is a puzzle across systems in development.
so there is a way to study it, just not any answers.

Im trying to run a debate here on what causes CCSVI not ms.

Someone asked how it would matter if people had worse ccsvi after years of ms. If ms causes ccsvi then the proof would be that people who have had ms for years. Looking at them would show a relationship.
Going out to try and prove this by doing a crummy job on the imaging on rrms patients is pretty far from scientific, but that seems to be what's going on.

scorpion wrote:

Billmeik wrote:so how about this: MS causes ccsvi. ???would it help to clear the ccsvi then?

ccsvi causes ms. When cleared will there still be attacks?

Good question Billmek. The chicken or the egg, right? It sems everyone on this site has their own idea of what causes MS. The list so far is; diet, excess iron, venuous blockages, venuous reflux, screwed up spine, lack of Vitamin D, and even gravity. I am sure there are some new ones but I have not really been on here to much lately so i am not sure what claims people are making. How anyone would know that CCSVI forms in the womb is beyond me.

Your jugular or lumbar veins just don't decide to be hypoplasic when you turn 24 years old ...

I didn't know MS was capable of growing webs inside your veins ... (from your Cardinal Veins - in the womb) ...

shrill but here is a mechanism:

Scar tissues is created by lesions in the brain.

These cells wash down the veins.

These are cells with a unique 'clenching' ability that they use to close wounds.

If it was proven that ms patients are susceptible to dormant bloodflow say while sleeping, where blood can lie still for hours in the jugulars...

stenosis might occur caused by the 'clenching'.


I am not saying I believe this theory but I want to see a web page where both arguements are laid out in detail...

the whole thing is a stretch if plood was going to magically kink hoses why wouldn't it be at the heart? or anywhere else. The only thing that explains the jugulars to me is congenital.

^ I would love to see evidence of that "scenario" happening.

I know what you're getting at but there's definitely no proof (nor double blind studies) of that.

CCSVIhusband wrote:I didn't know MS was capable of growing webs inside your veins ... (from your Cardinal Veins - in the womb) ...

yup, the cardinal veins differentiate into what will become the adult veins at 8 weeks into the pregnancy, the webs in the azygous most likely come from problems with this differentiation.

Does anyone know when jugular valves are formed during the pregnancy?

One of the problems to me with arguing that MS causes CCSVI is that CCSVI comes in a wide diversity of forms. If MS were causing it, I'd expect it to be homogenous. But a great diversity of possible presentations of CCSVI exist.

one of my favorites:

drsclafani wrote:The body and its pathology is rarely that boring. In the case of CCSVI, there are so many variations of the disease and its anatomical pathology

To date I have seen the following: In most patients they are mixed

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

So variation is the rule.

I feel an explanation that has MS causing CCSVI has to be able to explain all of those. Good luck with that. ;)

scorpion wrote: Bilmelk one suggestion I and others have had, which would go a long way to proving or disproving Zamboni's claims, is to send 50 people(25 with and 25 without MS) to Dr. Zamboni and have him figure out which of the 50 have MS. Very simple.

Zamboni, Zamboni, Zamboni! He is not the only individual on this planet who can diagnose CCSVI! It seems frivolous to go on suggesting the same dream. Drs. Dake and Mehta could do it, but it might just be a waste of their time.

Three neurologists, one ophthalmologist, two nerve conduction specialists, and three general practitioners took 15 years to diagnose my 'MS'. Are you proposing Dr. Zamboni, or someone else verify your '25 with'? What about the '25 without'? Will there be some absolute proof they do not have 'MS'? What criteria should they use, and how long will this take? Should the 'MS' patients be pre-diagnosed? By whom? How? How much will this cost? Come on, since you are expert in 'MS', enlighten us! Will this test be subject to the same scrutiny and skepticism as demonstrated here, or will it merely appear in a scientific peer-reviewed journal? You write the proposal, and I'll submit it.

CCSVI is much easier to diagnose, perhaps because its physical properties can be seen on a Doppler Ultrasound, and perhaps because they can be seen and sometimes treated, on an X-ray venogram. Or perhaps because no second examination is required, to compare to the first. Or blood tests, or ruling out of every other possibility. Ockham's razor is sharp and clean.

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

Anomalous confluens of jugular vein is the only one really accounted for by the model.

I don't know if anyone really believes the ms->ccsvi model but it does need to be disproven quickly to move on.