This Is MS Multiple Sclerosis Community: Knowledge & Support

Im getting some imaging done this week so you'd think id have some extra belief in this stuff going but doubts still are going through my head. Buffalo seems to be pointing to a ccsvi that is progressive and matches the ms of the patient in question. The inference is also being tossed around that ms causes ccsvi... If this is true then the whole logic breaks. Fixing the ccsvi wouldnt help the ms would it?

I worry too but there is a lot of momentum behind this theory. If you accept what the 66 or so experts agreed in the Institute of phlebology article, then CCSVI is primarily a congenital truncular malformation. Congenital...it came first.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

The placebo biochemistry is more or less unknown. We have no idea why this effect exists altogether. It can do many things to the body, but not to block veins. So far, at least.

Speaking only by my very own tiny experience, MS could not have malformed my clavicle bone, making it terribly pressing the left IJV. Nor my 3rd vertebra, that messed up the azygos. Could it?

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

MS is defined as scleroses (scars) in the brain. Therefore it cannot produce anything except neurological sympthoms. Probably you mean "If the underlying cause that produces MS is not CCSVI, but something that also produces CCSVI, then liberation will not work".

While this is true, the current data suggest strongly that the underlying cause is in fact CCSVI.

If i may, the current data strongly suggest that CCSVI could be congenital OR not. In some cases venous malformation may arise later in life for unknown reasons and MAY trigger MS. At least, this is how i understand the fact that they werent able to detect high perc in CIS cases, and that they claim to have associated the two disease's severity. Of course there are cases were congenital is all we can say (bones getting in the way etc) but there are also cases of people showing severe stenosis one day and nothing after a month or so. I read a case like that in this very forum.

MS causing CCSVI is another story. Like Sou, i too really doubt that this is even a remote possibility.

If progression is related to severity of ccsvi there are two option. 1. You are born with severe ccsvi and the severity of your ms could be predicted from when you are a child.
2. the ccsvi progresses with ms. This is a problem for me because it makes the ccsvi seem like a symptom of the ms, and fixing it doesnt seem like it would matter.

I am definitely on the truncular veins over brains side. Putnam is a key that needs replicating now (anyone got an old do or cat and a friend who is a vet>?) If there is a working animal model and we can give animals ms and cure them through that mechanism its good. Til then ites vapour ware.

I don't know about #1...it could be that two people, born with the same malformation, may or may not develop m.s. as a result. All the other factors (vit D, epstein barr virus, genetic disposition toward an over-reactive immune reaction toward iron in the brain) could come into play. To me this is one of the few explanations for the presence of CCSVIers in the Buffalo control group.

So I'd say the severity of the CCSVI you are born with cannot entirely predict your m.s. course but that there would be a strong correlation, which is what showed up in the Buffalo results.

For #2, isn't it just as likely that as CCSVI worsens, so worsens the MS? To me it's logical that the brain is upstream of the stenosis...there's a theory and an analogy elsewhere in the body (varicose veins) to how a stenosis will affect an organ upstream...there is no theory as to how a damaged brain affects veins that are downstream from it. Has anyone here come up with one, exactly?

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

you're talking about the arcane science of fluid dynamics of outflows. If you think about spin on a poolball you can see that how energy is applied to a system on the inflow can effect it's course later. I keep thinking of 3rd world villages I've walked into that have a tangle of water line still working where people get water. Is it possible for the flow of water to effect the kind of tangle?

hmm another image that comes to mind is the guy who's building a windfoil for a car that actually makes the car go faster. So by applying vortex tech to the outflow it makes the resistance less than zero. Can't see how it relates, other than its proof that effecting outflw can effect inflow.
In general like pumping water at the cottage, the outflow means nothing. the problem is always the intake, you can have leaks everywhere on the out side and it still works...In grey's anatomy a main medical book I was looking at the other day id say arteries get 70& of the pages. Dunno why.

so plumbers probably find distortions in pipes where the pulse of the water has changed the shape of the pipe over the years...or do they? I never found that in my plumbing experience?

It doesn't make sense to me that MS could cause the variety of different cases that cause CCSVI (bones pinching veins, veins being too short, veins with malformed valves, veins with general blockages, veins with membranes, etc.) It does make sense to me that a variety of different cases that cause CCSVI could lead to MS progression.

I've liked the plumbing analogy for CCSVI...it is very easy to understand a blocked drain.

If the inflammatory effects of m.s. result in slowed perfusion, perhaps particularly in the microvascular, then that could result in lower flow downstream. Low flow would result in the veins collapsing some for the time being...and since everything competes for space in the compact neck, other things would move into the space that was abdicated? I'm not saying I believe this, I'm just trying to explore how to make CCSVI secondary to the process of m.s. instead of primary/causative. This could also play into the idea of stenoses that come and go...if inflammation is high in the brain, then perfusion is lowered, and a stenosis appears...once inflammation decreases and perfusion increases, the stenosis goes away...as long as the veins remain pliable and nothing moves in so that the vein can't regain its normal shape? Again this would not apply to anyone with clear congenital malformations...I still don't see any way for m.s. to cause a complete jugular to not be there.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I think that Dr. Zamboni has already dismissed such a possibility when he liberated 18 patients in relapse and without use of steroids the symptoms disappeared within 4 hours to 4 days.

Somehow, i don't believe that CCSVI is vastly inborn condition - there's too much variety in the kinds of malformations. i don't understand how could the scientists come to the conclusion that ccsvi is congenital so fast. how do they know that?

i personally think that the blockages have to do with our lifestyles and bad posture. honestly, bones are no argument - with bad posture bones change shape, really. mine did. it'd explain progressive nature of ccsvi and also why different people start having symptoms at different ages.

additionally, i don't believe ccsvi is a sole answer, rather that it is one of the conditions that cause some of the symptoms termed ms.

_________________
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004

That needs to be replicated...why isn't anyone doing that study?! It is very convincing. Also the Sardinian children (where 90% of those with CCSVI obstructions grew up to get m.s. twenty years later) but were those just anecdotal observations and not scientifically observed? Since that hasn't been published.

I find it hard to argue the side of CCSVI being secondary to m.s...as was said above, there is such a variety of ways that CCSVI manifests...many of which (bone spurs, congenitally missing veins) could not have been caused by the m.s....so to argue that that m.s. came first and ccsvi second, you have to first put aside all those incidents, and it's not much of a theory that begins by naming all the exceptions!

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

how does it progress then?

btw the idea on how ms causes ccsvi is sort of mostly for stenosis...


btw I have really bad posture, should I be believing it caused my ccsvi?

Probably your CCSVI caused your bad posture.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition