hey ladies and gentleman

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

hey ladies and gentleman

Postby scorpion » Thu Oct 15, 2009 11:04 am

I wanted to let you guys know that you were right and I was, well, not as open mined as I should have been about CCSVI. I have just been through so many treatment "duds" that I guess I have trouble with claims of "major breakthroughs". I now see that a major university is prepared to do a pretty large study on CCSVI and how it may relate to the progression of MS. I am still very skeptical about CCSVI and I may throw the skeptical comment out now and then but obviously people much smarter then I are taking this seriously. Anyway I hope things work out and I will sit back and watch with interest. Scorpion
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Postby Rokkit » Thu Oct 15, 2009 11:50 am

Skepticism is healthy, but in this case none of us here are really qualified to debate the issue in any meaningful way. It's frustrating to have to wait for qualified researchers to plod through the process, when what we really want is to figure it all out for ourselves right here and now. For me, it is apparent that the wait for significant conclusions you can hang your hat on could be a few years. So I decided the best course of action was to wait "with veins wide open" (apologies to Creed).
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Postby mrhodes40 » Thu Oct 15, 2009 11:51 am

Scorpion I do not blame you a bit! I do not. I've had MS for 18 years and like you have been dropped on my head numerous times--- We are justified to be skeptical, super skeptical, to be frank. After a while your heart just can't take it any more.

Please do ask good questions! I think there will be some real surprises as this develops personally. Will we all be on Campath and stents? heck there is not enough yet to know we will not need suppressive as well, we may.

BTW, I had a big advantage, my skepticism took the form of "MS is not likely autoimmune" some years ago, & I had very good reasons for believing that. When this came along for me it was the super exciting thing to dig in and study, the best thing to come along in ---well, ever.

But it was always a really good model. IF and this is a big qualifier, a person CAN read the related research and I mean like the mean transit time studies and the old vascualr studies, there is vastly more to support this than Zamboni which is why I was personally all in even though the Ferrara team is only one group and the "100%" is unusual. It was never about the technicalities of the current studies, it was always about the wider picture: it fits really, really well in a lot of ways. This made me happy to volunteer to be part of the work going forward and accept the risk of a new unproven idea.

It is going to be great fun for us all to watch this develop over the coming months...

and may I say, as an MS patient for 18 years, I still almost get tears in my eyes when I realize we really are talking about months... They are going to have to fast track this if stuff is really as conclusive as it appears it may be :idea:

Remember what it felt like when you first read of Tovaxin and realized it was going to be YEARS............ 8O
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Postby SammyJo » Thu Oct 15, 2009 12:44 pm

I lean towards "MS is not likely autoimmune" theory, since I seem to have done better after giving up on the MS drugs geared towards modifying/suprressing my immune system. This theory now has some support in the neruology research world as well.

So where do we end up after stenting? You mentioned Campath, do you feel that immune suppression may still be neccessary? Or the gentler approach of something like LDN?
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Postby cheerleader » Thu Oct 15, 2009 1:05 pm

Thanks, scorp.
Sorry for any stepped on toes. It's been intense around here, and emotions run high. There will be more research from respected neuros and universities....I realize that's what is needed.

In congestive venous myelopathy or stroke the immune system eventually backs off after the injury to tissue ends. In all honesty, I think the only long term post stent treatment for CCSVI immune issues/healing will be a heart healthy program (something post heart attack or stroke patients do) like Dr. Cooke's Cardiovascular Cure- low fat diet, exercise, physical therapy, stress reduction, mitigating toxins, supplementing w/ antioxidants, etc. You can bet folks will look for ways to monetize this, and there will be more studies and experts coming forward with their own take on post-CCSVI interventions.

The most important thing is that jugular venous function will be looked at and treated. Only time will tell the rest of the story-
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby radeck » Thu Oct 15, 2009 1:46 pm

Looks to me like the discussion is not about MS being in part auto-immune or not, but about whether it is PRIMARILY auto-immune. We know that the immune system does some damage (a lot in the early stages, probably little in the late stages). This is not just on the lesion level (which we know correlate little with disability) but on disability level itself. The reason I find CCSVI attractive because it offers a good explanation for WHY the immune system freaks out in the first place. It makes auto-immunity SECONDARY, but not non-existent. Btw that makes me wonder if there is at all a disease out there that has been proven to be primarily auto-immune?

SammyJo, there have been thoughts in a bunch of threads about "supportive" immuno-modulation or suppression for the time around the vascular procedure, just to help with that IS component (this has also been discussed for stroke patients, though not widely used AFAIK). This may not have to be hard chemo, it could be more benign (Tetracyclines like the common Acne medication Minocycline are being discussed) and/or more targeted immuno-modulators that don't make you as prone to opportunistic infections as e.g. Campath and Tysabri do. There are various substances, some taken directly from mother nature, that have shown to regulate the IS selectively without such side effects.

I'm sure that a nutrition program supportive of endothelial health is tantamount, and it is hopefully enough for most patients. Some others (especially those were functional abilities like eyesight or motor control are at risk) may want to have immuno-modulation as supportive measure "to be safe".
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Postby patientx » Thu Oct 15, 2009 1:56 pm

radeck wrote:that makes me wonder if there is at all a disease out there that has been proven to be primarily auto-immune...


Rheumatic fever
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Postby mrhodes40 » Thu Oct 15, 2009 2:56 pm

Rheumatic fever


Say, you are right px in that this is a real autoimmune disease but I think Radek's point is that these autoimmune diseases are not primary-- in the case of RF, it is secondary to strep throat type a beta hemolytic strep throat cross reacts in some people with heart and joint tissue, but after the initial event.
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Postby radeck » Thu Oct 15, 2009 3:25 pm

Yes, I am looking for a PRIMARY auto-immune disease, that is a a disease in which it is proven that at some point in an animals live the immune system starts turning against that animals own tissue, without any environmental or mechanical triggers.

Now that i'm thinking about it I suppose that's not a theoretical possibility, i.e. either the IS would attack the body itself through a genetic defect, or it is made to do so later by another trigger. Seems like there is not much space in between?

I guess not even classical MS science has always maintained that it is primarily auto-immune, but considered the possibility that it's caused by a pathogen misguiding the IS to attack the body...
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Postby Out2l8 » Thu Oct 15, 2009 3:38 pm

What bout Lupus?

Another horrid auto immune disease with no known cause. Also comes in several varieties with different symptoms.
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Postby Jamie » Thu Oct 15, 2009 3:54 pm

The 'true' AI diseases seem to have a much stronger familial/genetic link than MS ever did.
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Postby patientx » Thu Oct 15, 2009 4:44 pm

mrhodes40 wrote:
Rheumatic fever


Say, you are right px in that this is a real autoimmune disease but I think Radek's point is that these autoimmune diseases are not primary-- in the case of RF, it is secondary to strep throat type a beta hemolytic strep throat cross reacts in some people with heart and joint tissue, but after the initial event.


True, but I don't think anyone today will argue (at least in the case of MS) that the body suddenly starts attacking it's own tissue. I believe the commonly held opinion is that some trigger, i.e. Epstein-Barr, kicks off the process.
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Postby radeck » Thu Oct 15, 2009 9:09 pm

patientx wrote:True, but I don't think anyone today will argue (at least in the case of MS) that the body suddenly starts attacking it's own tissue. I believe the commonly held opinion is that some trigger, i.e. Epstein-Barr, kicks off the process.


Well, what a relieve. In that case there's really no such thing as a conflict between auto-immune proponents and opponents, since there aren't any of the former kind.
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autoimmune disease

Postby GiCi » Fri Oct 16, 2009 4:46 am

It seems to me that whatever role immunity plays in MS it would be a lot better to deal with it with open veins.
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Postby patientx » Fri Oct 16, 2009 6:20 am

radeck wrote:
patientx wrote:True, but I don't think anyone today will argue (at least in the case of MS) that the body suddenly starts attacking it's own tissue. I believe the commonly held opinion is that some trigger, i.e. Epstein-Barr, kicks off the process.


Well, what a relieve. In that case there's really no such thing as a conflict between auto-immune proponents and opponents, since there aren't any of the former kind.


Or, you could argue there are none of the latter kind, since even with the CCSVI theory, the body's own immune cells are doing the damage.
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