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Article Link: New Data Challenge Theories Of Multiple Sclerosis (ScienceDaily Feb. 23, 2004)

Could it be that the reflux of blood from blocked veins is what causes the death of oligodendrocytes? If this was found out 5 years ago... why is it taking so long for people to let go of the autoimmune theory? I guess funding controls a lot of how research proceeds unfortunately

Hi Daniel...
Prineas and Barnett! That will get Marie's attention...she's referred to that paper a few times, it's one of her favs.

Yes, the injury to the brain tissue from refluxed blood and lack of oxygen could certainly cause the death of the oligo cells, without any immune activation necessary.

This is a new paradigm. My hubby is now in an MRI /MRV machine, and we will learn today if stopping the reflux of blood into his brain and allowing for correct flow via stenting has resulted in a return of the oligos and remyelination. And if so, I will shout it from the rooftops.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

We have discussed this paper on this forum it is a great paper, and as it is to you, to me, it is an indictment of the scientific community that they continue to talk of MS as if autoimmunity is the only thing that science has ever uncovered and that it is proven somehow. IT IS NOT. To be genuinely scientific you have to acknowledge this work and accept that it means something that needs deeper looking.

It also means that the toxic drugs given to people may be harmful without offering any real benefit. The fact of ongoing unquestioning allegiance to the autoimmune model has a lot to do with the economics of MS IMHO. I mean really if you are Biogen and sponsoring a symposium for docs on MS, do you offer as a guest speaker THAT researcher??? Of course not!

But the docs who went to the symposium feel like they just went back to school and got up to date on the newest research and they are in the know about all things MS.

In fact, the really important thing to know about that paper is that Dr John Prineas who was the lead researcher on that paper was THE leading MS researcher at the time when that paper came out.

In fact he had been the recipient of the Dystel prize for MS research because of the huge body of research he had contributed.

The work they did on that paper convinced Dr Prineas that MS is NOT autoimmune. It was proof in his mind. He still believes that MS is not autoimmune.

But is he some old obscure person? No, he is currently lead advisor to the Lesion Project, that Lucchinetti deal people talk about so much.

He also received the Charcot award for lifetime achievement in MS research this las January.

It is unbelievably important that THIS man, the EXPERT'S expert believes MS is not autoimmune. And I believe we will see some newer work tying the ideas of Dr Prineas into CCSVI soon

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Reading all of this and constantly thinking of the potentially unncecessary drugs that MIGHT work and cost thousands makes me want to stop Tysabri. I mean I don't think I'll take that chance yet, but I had to miss this month's infusion since they wouldn't give it to me until my taper was done since it does compromise you immune system. So I told them I'm just going to wait until I get back. I think I'll wait and see if I'm still progressing to consider starting again. I'll just put the freakin' money in the bank for my CCSVI payments and get on with it. My entire way of thinking about all of this has changed so much. The way you describe how the oligo death could happen w/out autoimmune makes it seems like they almost stretch things to fit that particular model. I guess that's why it's a paradigm.

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I am staying with copaxone for at least a while. I think it is probably true that there is inflammation and that it is harmful to the lesion. Dr Simka said that some types of venous lesion heal better with steroids pulsed in.

the bulk of what we have discussed is largely speculation based on current research. There will need to be so much more learned for example is it helpful to reduce inflammation with one of these drugs after CCSVi treatment or not? We do not know the answer to that yet.

Wobbly BTW take tysabri and still does. However he thought it helpful before the surgery so continuing on it was good in his mind.

I think people should talk to their doctors (same old song I know), but as a rule of thumb if you would have stayed with your drug before because you thought it helped, consider staying with it after surgery too at least until more is known about how CCSVI treatment impacts MS. We do not have long term data yet......... For all I know all of the Liberation 100 had a CRAB they stayed on, ya know? Or had steroids...no body knows yet for sure.

Conversely if you think your drug is useless and it allowed progression, talk with your doc about dropping it as you would have otheriwse.

ANd now speculation that is entirely unsupported: perhaps they will discover that a little inflammation control is good for say 6 months after surgery but that something little, like pulsed steroids, are good enough...

say 20 mg a day for 5 days every month or something like that. It'd be a heap more mild on people. Total speculation!!

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

OK let's try this again with me hitting submit AFTER I write something . My thoughts are this exactly, and also why I'm thinking of giving up the Ty, but asking for one of the CRAP's (oh sorry, CRAB's) since Ty does not knock down inflammation as far as I know. Someone please correct me on that one if I'm wrong.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

123

It was my understanding that Tysabri blocks white cells from crossing the blood brain barrier and therefore prevents inflammation in the actual brain tissue. This is why PML is such a concern, the immune system can't get in so the virus can replicate unchecked. It's also why steroids are given after plasma exchange to wash the Tysabri out. It prevents what's known as Immune Reconstitution Inflammatory Syndrome (IRIS) from occurring. In effect, once the Tysabri has been washed out, the immune system would go in and create so much inflammation in its attack against the JC virus that the burst of inflammatory activity would cause more damage than what is needed to just deal with the virus.

NHE

NHE,

Thanks for that reply. It definitely gives me pause concerning stopping it and I will discuss this at length with my doctor and see what he thinks. Sounds like it might not be such a good idea until we know more.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

A key thing to think about is also the sups we don't take because they are said to upregulate the immune system. For example, you can find a number of places that say to avoid ascorbic acid if you have MS. Ken

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Understanding MS 101: Doctor Talk and People Talk<br /><br />