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

Postby Jamie » Wed Sep 16, 2009 9:03 pm

Things will change.

Agree that we need to be balanced in our enthusiasm and promotion efforts but firmly believe that the word needs to be spread, the wheels may turn quicker if a lot of people are pushing at once.

If it wasn't for people talking about it here Mel would still be sleeping 20hrs a day.
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Postby whyRwehere » Thu Sep 17, 2009 12:09 am

Speaking of...how has Mel's boss' wife been doing?
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Postby zap » Thu Sep 17, 2009 4:55 am

mrhodes40 wrote:
I have a neurologist who is very open minded and he never subscibed to the auto immunity theory. He always thought the immune response was a secondary response and that something else occurred first


as a comment my FIRST neuro had this point of view also, they ARE out there just not in sufficient numbers to influence the overall opinion of the neurology community at large.

But if there's enough of them it will help the switch in what "everyone knows" I read a paper one time that suggested the tipping point is 30% as soon as that level is reached a new idea gains momentum but before that it remains a "finge" idea.


This made me remember this paper - I posted it before but it is worth bringing up again, I think:

http://www3.interscience.wiley.com/cgi-bin/fulltext/119454590/PDFSTART

A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease in structural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of observation, and the points from which observation takes place, differ. It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated.
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Postby Youri19 » Thu Sep 17, 2009 4:57 am

Hello everybody

This is going to be my First post here, and sorry for my pour English but it is not my native language :-) I have been following al this about CCSVI for some time on the forums and I find it very interesting. Last week I had made a appointment for today with my neurologist.

This was a relieve. Hey didn’t know about this but after giving him the information and telling him about it he got excited. He said that if this is al correct it could make a great swift in the MS world. I also told him that I want to have a Doppler research according to dr Zamboni specifications. He told me that he first want to look into everything but he found it very interesting to see if I also have stenosis like dr Zamboni described.

I have agreed with him that we will contact each other in 3 weeks, after he have read more about this, and then we are going to take steps to see if my veins also have stenosis.

I’m very excited about this and whanne thank everybody here for giving so much information, especially cheerleader.

I hope I can keep you people uptodate about the CCSVI process here in the Netherlands :-)

Greetings Youri
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Postby whyRwehere » Thu Sep 17, 2009 5:04 am

It is not very clear when that paper was written, although all the quoted works seem to be from the 1980s. So I am assuming this was known about in the 80s, besides by Schelling, which is really very annoying.
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Postby Jamie » Thu Sep 17, 2009 6:57 am

I'm not sure actually, I'll ask Mel to find out.
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Postby mrhodes40 » Thu Sep 17, 2009 8:03 am

Zap
that paper is vitally important to read. Really I wish that the entire medical profession could digest it and understand it with an open mind.

Why, yes it is depressing to think this has been missed for so long.

The thing that gets to me is that a vascular surgery specialty actually has a total study time that is longer than a neurology specialty. It is absurd to assume that neurology students are learning real stuff that can help people and other specialties are basket weaving their way through the internship and residency. As if one specialty is somehow the "boss" even when the issue falls into another specialties expertise

But to a certain degree maybe we can agree that this is a vascular problem and leave aside for now the idea it has anything to do with MS.........

Gici started this thread offering that the medical community can't come along yet, the work on CCSVI as cause of MS is too preliminary....so it is of limited helpfulness to push them.

But to what degree is it a vascular problem that deserves treatment in its own right? This is an identified severe occlusion in the venous drainage of the head, a head that holds a brain that is struggling with MS BTW, it just seems logical to go ahead and treat that and let the "Causes MS or not" chips fall where they may, feeling confident that on basic physiological principles you have given the brain the best chance for good circulation and thus have maximized the chances for healing.

So far only Dr Dake has been willing to look at the problem that way. Others have insisted on looking at "I don't see that we have proof that this causes MS yet" angle and ignoring the elephant in the room: verified compromised circulation (here I am talking about the tested person with venous abnormality) as if it is totally fine to leave circulation compromised while they have their academic debate about MS causation.

The thing that I find puzzling is that it SEEMS from my ignorant position-not being a doctor- that the vascular doctors ought to be more assertive about plying their trade in light of a treatable condition they have been trained to repair. :?

Maybe gici will comment something I missed
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
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Postby Ana » Thu Sep 17, 2009 9:18 am

Youri19 wrote:Hello everybody

This is going to be my First post here, and sorry for my pour English but it is not my native language :-)


Hi Youri19,

as a lot of people from the Netherlands understand German very well, you might be also interested in this place: http://csvi-ms.net/ (the forum is here: http://csvi-ms.net/forum/ )

Greetings

Ana
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CCSVI

Postby GiCi » Thu Sep 17, 2009 2:17 pm

I understand how frustating it is for people, who believe they see the truth, meeting with the obtuse resistance to change by the majority of the medical profession. It is something to scream about.
Unfortunately we have to deal with reality and accept that it took a long time for science to accept that the earth was not the center of the universe and that it was not flat but round.
This may sound small but is in my view significant.
A colleague consultant anaesthetist has a dear friend affected with MS. He asked me to talk to her and following our talk I was able to convince a cardiologist to prescribe a MRI study of her neck vessels. Surprise, surprise, the test showed anomalies of the blood drainage of her left side.
I am going to pursue this and try to get her a venogram and hopefully a liberation procedure. That would be the first in Northern Ireland.
I maintain my reservations about the usage of stents (as I have expressed before), but I accept that brave people may pave the way to further progress.
I thank all the people who take the time to take part in this forum, because they will help in making a difference in the lives of many MS patients.
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Postby mrhodes40 » Thu Sep 17, 2009 3:09 pm

Unfortunately we have to deal with reality and accept that it took a long time for science to accept that the earth was not the center of the universe and that it was not flat but round.


Ptolomy knew that the earth was in the center of the universe--of course :wink: so he set to work figuring out how the other planets circled the earth. Naturally because the sun is the real center of the universe, from the perspective of the earth, the planets seem to move in loop de loops as we look at them from here, so he devised very complicated mathematical formulas that predcited with complete accuracy where the planets would be next.

This feat of mathematical genius stood as the proof of the fact that the earth is the center of the universe for 1000 years.

The lesson to be had is that great and impressive feats of science are not necessarily accurate, and new data has to be considered. 8)

Gici, great news that you got someone tested and discovered a typical stenosis! YEAH!! I wish you well on further help with other's evaluations and hope you find a good way to treat that you feel comfortable about... That person is lucky to have met you!

Just curious: You are not impressed that addressing the circulation itself for its own sake is a good enough argument to make to people and that some might be persuaded by that alone?

The logic that returning good circulation is helpful for its own sake is not persuasive? Would it have been persuasive to you before at all?

Do vascular doctors then only treat diseases and never circulation ITSELF?

My standpoint has been that we do not know if it helps MS but why can't we treat the stenosis for its own sake? I am just asking, curious, because it seems logical.

Because if a doc was in a chest of a person with heart disease in general and found a vessel with a 90% blockage and collateral circulation he would treat it even if that vein would not directly impact the heart itself wouldn't he? No one would question that would they?

I guess that is my deal, I think vascular doctors treat circulation not other diseases necessarily, therefore treating the stenosis seems only ordinary, but maybe that is wrong.

it sure seems to be true that the docs are not lining up to do it, are they :lol: :x :cry:

but is that because they demand it is proven to help MS and that they do NOT treat circulation itself? Or maybe the issue is that they do see the circulation issue but are concerned about the best safest approach to fix that and not knowing they demand proof of benefit before risk is undertaken?

I am naive, I sort of imagine the vascular physician's medical community standing up and saying 'this is a vascular problem, thanks, we'll fix this. Neuros can figure the rest out later.' :oops: :oops:
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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Postby Loobie » Thu Sep 17, 2009 4:11 pm

I actually find full on resistance hilarious to an extent. To do that you ought to be very confident in what you think it is. So ask your neurologist. So your success rate treating the autoimmune model is what? You have a problem with me correcting stenosis in my jugs? Why?

Human nature has created in us the need to play "I'm right". I'm going to pick on Bob here because I know he can take it. Go to the Tovaxin thread and look at how the handful of people who want that drug back in study are talking. All one would have to say is "apply the exact same stuff you were on here playing devil's advocate with to the Tovaxin model. Why exactly does this make more sense, and while you're at it, show me, I'm from Missouri?". I think that no matter what happens going forward you have to be your own advocate to the max. Think about it.

We go to the doctor and he is engaged with us for about 30 minutes. He is not thinking about your case after you leave unless he is someone of uber intelligence. He is, after all, seeing someone right behind you. He has another case to see. They prescribe the meds they do because that is what's approved and they have relationships with the people who are convincing them to Rx the drug that run considerably deeper than his relationship with you. Why in the hell if what he's doing is not working do we keep on banging our heads on the concrete?

The definition of insanity is repeating the same behavior and expecting different results. We allow our doctors to have plenty of our fortune doing just that. I, for one, am choosing to spend what I need to on things that are showing that they work. Think of this like computers. Are you still using your Commodore VIC 20? Hell no. Why shouldn't we take advantage of technology advancements in this type of thing as well. The new computers do the same thing as the old, just way better. That's called obsolesence. My MS drugs proved themselves obsolete the first time I had a relapse while on them. Yet I still kept taking them. What was that I started this paragraph with again?
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Postby Rokkit » Thu Sep 17, 2009 4:40 pm

mrhodes40 wrote:Ptolomy knew that the earth was in the center of the universe--of course :wink: so he set to work figuring out how the other planets circled the earth. Naturally because the sun is the real center of the universe, from the perspective of the earth, the planets seem to move in loop de loops as we look at them from here, so he devised very complicated mathematical formulas that predcited with complete accuracy where the planets would be next.


Galileo figured out that the planets orbited the sun, not the earth, obviously a major paradigm shift. But he didn't realize the orbits were elliptical, he assumed they were circular. So Ptolemy's formulas were actually more accurate than Galileo's at predicting the paths of the planets, even though Galileo had a much more accurate view of how things worked. Copernicus figured out the orbits were elliptical and everything fell into place.

Of course, just because a theory is radical, that doesn't make it right, just because Galileo was right. If it's right, it's right. So maybe we're at a point where Zamboni has figured out the planets orbit the sun, and we're justing waiting for Copernicus to come along with the incremental piece of the puzzle that ties it all together.

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Postby Lyon » Thu Sep 17, 2009 7:51 pm

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Last edited by Lyon on Tue Jun 21, 2011 5:43 pm, edited 1 time in total.
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Postby mrhodes40 » Thu Sep 17, 2009 8:00 pm

So maybe we're at a point where Zamboni has figured out the planets orbit the sun, and we're justing waiting for Copernicus to come along with the incremental piece of the puzzle that ties it all together.
I absolutely agree this is entirely possible :D
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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Postby scorpion » Thu Sep 17, 2009 8:18 pm

I think this post on aimspro sums up Bob's position(I think) on CCSVI and mine.

A spokesman for the MS Society said, "We note that this is the first time clinical trial data involving Aimspro has been formally presented to the medical community. In the light of this new information, we want to highlight how important it is that research findings are responsibly disseminated and the need for peer-reviewed, published research information. Reports in the media can sometimes be limited or exaggerated and may lead to disappointment. The Society awaits publication of the results of this clinical trial."


By coincidence, I met someone yesterday who has been given Aimspro for a nerve condition. She said that she had seen no improvement in her condition.

I think we all need to be very wary of the likely effectiveness of this product. How many people have experienced improvements? / how long did they last? / how many saw no improvement? The data to date has been patchy to say the least.

No proper trails have been completed and all we have is claims of dramatic recoveries but with no / little evidence.
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