Why can't we just get the procedure? What is the problem?

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

Re: Neuros challenged CCSVI

Postby thisisalex » Mon May 17, 2010 7:37 am

MarkW wrote:Looking at the situation in the UK.
The neuros challenged CCSVI de-stenosis as being no benefit for pwMS. As neuros are considered to be the experts on MS this blocked all possibilities under our public health system (NHS) which will take many years to address.


Mark is right. MS is a neurological illness. full stop.

yesterday i had an interesting talk with a neuro about CCSVI. They dont accept it as a vascular disorder. because there is no proof for that.

OK i sad, then lets just talk about veins, but not MS. He said its not a problem if one has stenosed jugular. because there is no proof for that.

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Re: Let's agree to differ

Postby fogdweller » Mon May 17, 2010 11:23 am

MarkW wrote:My years of experience in the pharma industry lead me to write this:
The big bad pharma conspiracy theory shows a lack of knowledge of big pharma. I doubt that most pharma cos have even heard of CCSVI at a senior level. Speed of reaction is not a feature of big pharma !!
A big pharma approach would be to promote their drug alongside CCSVI therapy, as life long protection against MS.
So AMcG, let's agree to differ on this.
Kind regards,
MarkW


I have to agree with MarkW on this. Although profits may be more important to them than patients, to misquote the Godfather, thats just business. The real issue is that there really isn't a Big Pharma. There are many little pharmas (although not very little) and many pharma wanna bes, and they do compete. If CCSVI is going to prove true and treatment for it will superceed the drigs currently in use, they would deal with that, not try to undermine the CCVI theory. (Probably work on proving stents plus drugs better than stents alone, or something like that).

The drugs to date have been frustratingly poor, but I am sure that the paharms too wish they had found a silver bullet, and what they did find (at great expense and directed to a relatively small market) was at least a little help to some patients (not me, unfortunately.)
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Re: Neuros challenged CCSVI

Postby fogdweller » Mon May 17, 2010 11:27 am

[quote="thisisalex]

yesterday i had an interesting talk with a neuro about CCSVI. They dont accept it as a vascular disorder. because there is no proof for that.

OK i sad, then lets just talk about veins, but not MS. He said its not a problem if one has stenosed jugular. because there is no proof for that.

22 catch[/quote]

\I agree that we should treat it as a vascular disorder, and in fact treat it. We accept that poor circulation to the brain is bad and should be releved. (i.e. strokes and TIAs.) Ask your neuro if the circulation is poor, should it be releved if we can. full stop.
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Postby blossom » Mon May 17, 2010 11:46 am

i have tried talking to both neuro. and vasc. dr.'s. doing what you just said-forget i have ms -and pointed out certain health issues that under other circumstances i feel they would consider blood flow problems. closest i got so far was my pcp said he would order a doppler for the arteries but not the veins. so-the beat goes on. try try again i guess.
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Postby fogdweller » Mon May 17, 2010 12:30 pm

blossom wrote:i have tried talking to both neuro. and vasc. dr.'s. doing what you just said-forget i have ms -and pointed out certain health issues that under other circumstances i feel they would consider blood flow problems. closest i got so far was my pcp said he would order a doppler for the arteries but not the veins. so-the beat goes on. try try again i guess.


That is a good point. All the vascular dr.'s seem to look at arteries, not the whole circuit, so blood flow problems are considered to be arterial, not venous. after all, veins are flacid, expand, and develop collaterals if there is a problem under most circumstances, I guess. However, circulation problems in the lower extremities are largely veinous and lead to ulcers and lesions that are very reminescent of MS plaques.

I am not a doctor, but here is something you might try. Bite the bullet with the vascular dr., bring up CCSVI, say that you think you may have that problem and that you think it may be causing your vascular symptoms. One reason you think you may have that problem is that you have MS and careful, scientific studies have shown that MS is signficantly correlated with having CCSVI. Fixing the CCSVI may fix your vascular symptoms. If it also helps with some of the MS sympotoms, so much the better, but you are not counting on that and that is not why you want the CCSVI treated,. So far, as you are well aware, there is no scientific evidence that fixing CCSVI imporoves MS.

Don't even involve the neuro. Remember, you are not trying to get the MS treated, just the vascular symptoms. The only relevance the MS has is that MS is strongly coirrelated with having the vascular problem CCSVI.

Let me know if you have any luck.
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