I am in doubt about CCSVI diagnostics

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

Postby IbRiz » Tue Jan 19, 2010 1:39 am

Hi!

When I went for scans with dr Simka - he immediately saw stenosis in my left internal jugular - directly from the MRV. The following doppler-scan was just a formality, which confirmed what he saw at the MRV pictures.

I have since then been sleeping inclined (have had no operation), and this has so far done me a lot of good. My symptoms are now fading away, and I am able to live an almost completely normal life again! I really believe that IBT works wonders for stenosis in the jugulars - at least it does for me. Try it - it's simple (oh - and there is no money involved :wink: )

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Re: MS is complex and multi-factorial

Postby AndrewKFletcher » Tue Jan 19, 2010 4:17 am

MarkW wrote:MS is a very complex disease otherwise there would be a complete cure by now. I hope that CCSVI treatment will stop progression but I think it improbable that the immune system will correct itself immediately. So a possible picture is have CCSVI treatment after diagnosis. Then checkups to confirm it is still OK, every year or so. Plus drugs to keep the immune in balance. Remember pwMS still will have genes for MS so don't expect CCSVI to be a cure.
MarkW


There you go again Mark that old word Biased appears to be a favourite of yours. Followed by supporting the immune response (now redundant) and a good helping of useless drugs to boot. Then you add Don't believe anything you read on this forum.

The morons that gave chemotherapy and immune suppressing drugs for all those years with no significant reversal or even remotely halting progression for people with ms should be jailed or at least given the same treatment!

Follow the money and you find the real snake oil salespeople.

The immune system never did need to "correct itself" Maybe it does after a few hundred thousand dollars of toxic drugs have been administered but ms is not and never was autoimmune! It is a circulation problem!

http://csvi-ms.net/en
Much more accurate than accepting, as gospel, any posts on this site. This site is heavy reading and slightly biased (towards CCSVI)
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IBT website: http://inclinedbedtherapy.com
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Postby cah » Tue Jan 19, 2010 7:23 am

Have read all that scientific, medical stuff for a couple of months now, I really wonder if there actually is such a thing as AUTOimmunity. The immune system is a system of reaction, not of action. It learns and trains itself constantly. Otherwise vaccines wouldn't work. It's a system of many bits and pieces, and everbody knows the more parts a system has, the more can go wrong. But it seems that this system is composed of so many parts not like a clockwork, with one failing gearwheel stopping the whole thing. The parts merely seem to balance each other. It is a complex yet well developed system.

Being a system of reaction, I cannot imagine that it one day just says "Hey, let's go crazy" by itself (which would be AUTO). There always must be a reason, a cause to it, may it be environmental or genetical or whatever.

If you take a look at other so-called autoimmune deseases, you find that almost all of them are SUPPOSED to be autoimmune, almost none of them PROVEN to be autoimmune. For every single autoimmune desease exists also another explanation.

To me it seems that "could be autoimmune" is the standardized medical paraphrase for "we have no clue".

Ok that might be a little bit exaggerated but I think you know what I mean.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Zeureka » Thu Jan 21, 2010 8:03 am

I was also at first skeptical. But saw some pics of my doppler exam on the screen. You can in the color doppler clearly see if the cross-section circle of the artery and vene next to it is red or blue. Red = blood flow in one direction, blue in the other. The doctor can tell you which one is the artery and which one the vein.

If the jugular vein is not fully blue, and has only tiny blue moving spots/worms like a sieve (= obstacled blood flow) , is empty from colour so a black space (= no blood flow), is red (= reflux) and/or the colour dot is very small/narrowed from dimension (can also be in combination), there may be a problem.

I had blue moving spots/worms in my left jugular at one point and a black space in another area (and diagnosis was: occlusion by pathologic valve). Simka said if he would do an MRV he would certainly find confirmation.

This is a very simplistic/unmedical explanation (I'm only biologist, not a doctor), but at least I understood it like this from Zamboni's paper. And after what saw on screen at Simka's visit understood my diagnosis.

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Postby patientx » Thu Jan 21, 2010 8:33 am

cah wrote:Being a system of reaction, I cannot imagine that it one day just says "Hey, let's go crazy" by itself (which would be AUTO). There always must be a reason, a cause to it, may it be environmental or genetical or whatever.


But that is exactly what researchers who subscribe to the autoimmune theory argue. Some, trigger, like maybe Epstein-Barr virus, sets off the autoimmune reaction. No one is arguing that the immune system starts attacking the body's tissue without some prompting.

If you take a look at other so-called autoimmune deseases, you find that almost all of them are SUPPOSED to be autoimmune, almost none of them PROVEN to be autoimmune. For every single autoimmune desease exists also another explanation.


Not exactly true. Rheumatic fever is an autoimmune condition, with a known cause - the Streptococcus bacteria contains proteins that resemble human tissue.
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Postby mangio » Thu Jan 21, 2010 8:46 am

maybe alot of people that have been told they have MS will actually
turn out to be Cardiovascular patients..could it be?
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Postby Zeureka » Thu Jan 21, 2010 8:54 am

In fact it's a genetic predisposition (the role of genetics is now proven), which can then be influenced by environmental factors such as eg climate, diet, virus, how we feel and/or other... and I would say all auto-immune diseases are having this complex cocktail.

How the rather mechanical vein issue now links into it, is another interesting factor,... and in my view it is indeed most likely not the full solution for MS. But it would seem - given the strong link between CCSVI and MS - that it could be an important player/factor in the illness (whether cause or effect). And we will know soon how, as more research will now be focusing on this!

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Postby Billmeik » Thu Jan 21, 2010 9:00 am

might be interesting to look at what goes out the windows if ccsvi is true. Autoimmunity? gone. Complex disease? gone. What we have is a complex reaction to a simple problem. Everything is just a reaction to that problem.
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Postby Zeureka » Thu Jan 21, 2010 9:11 am

mangio wrote:maybe alot of people that have been told they have MS will actually
turn out to be Cardiovascular patients..could it be?


Dr Roy Swank (Neurologist), who had positive results for Msers with his low-saturated fat diet, actually wrote his book for cardiovascular and MS patients. He then changed the title of his book only to "The MS diet book" as he realised that cardiovascular patients would not buy the book...so issued seperate books.

I do however not think that it could be only all about a cardiovascular patient problem. Genetics play a role, but in case it would be genetical to have veins that are not OK it could be a factor but cannot be ONLY this. It happens stimes that in the case of equal twins (= having precise same genetical material) one develops MS, the other not. This illustrates that other environmental factors also play a role to develop MS. Maybe the other twin has "benign MS" and never encountered a factor that triggered it ? eg did not get a virus, had a different diet or lived in another lattitude or did whatever else in life without knowing so he was the lucky one?

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Postby Zeureka » Thu Jan 21, 2010 9:22 am

Billmeik wrote:might be interesting to look at what goes out the windows if ccsvi is true. Autoimmunity? gone. Complex disease? gone. What we have is a complex reaction to a simple problem. Everything is just a reaction to that problem.

Unfortunately think the answer will still not be that simple...the other factors are likely to still play an additional role. But it's probably a question of weight. With this mean: Don't think that MS will just go completely over from the neurologists to the venologists... I know this idea currently disturbs them though :wink:
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Postby ndwannabe » Wed Feb 03, 2010 7:15 pm

Ana, thanks for chiming in! The fact that "negatives" are seen and clearly admitted makes my suspicions all wrong (I *want* them to be wrong :lol: )

Hihopes, where did you get your scans? And yes, plese, I would love it if you posted them (maybe you already did, have to go search..)

Thanks again, everybody!

BTW, I got a phone call today from Stanford (the usual, they are in the research mode right now, and I am being put on the list)
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