Response of Italian MS Society

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

Postby 6max » Sat Oct 17, 2009 11:59 am

it' Serono that pay MS Society... We ' re disgusting :twisted:
Dott Zamboni have to fight against ''National Committion'' and Scientific Comunity... Now he hasn't patients to surgered almost . All is stopped or very slowly 8O
I' m MD and Zamboni said me '' Help me to do sensibilitation in pubblic opinion and say that all ms people have to send e- mail to AISM ''
See you,
Max
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Postby ErikaSlovakia » Sat Oct 17, 2009 11:49 pm

Hi Max,
so far we do not have this problem in Slovakia, but this is what I am scared of.
You will need a lot of energy :(
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby radeck » Sun Oct 18, 2009 5:15 am

redundant post
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Postby whyRwehere » Sun Oct 18, 2009 6:31 am

I was a bit confused by Max's post. What is AISM, and does Zamboni want us to write them? If he does, I will....someone post the address.
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Italy

Postby GiCi » Sun Oct 18, 2009 6:41 am

To be honest I do not believe that fascism against science and MS patients has developed in Italy. In addition it is a generalization to say that Italians like debates for the sake of it.
I find the response of the italian MS society conservative and shortsighted and completely subservant to the interests of the powerful lobby of the neurologists. For them to admit that Zamboni is right would mean to say: dear folks we are sorry we have treated you with all sorts of potentially harmful medications for decades without a shread of evidence regarding the etiology of MS. Do we really expect the neurologists to do that easily?
In time they will have to and, I hope, many will regret their present obtusity.
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Re: Italy

Postby Lyon » Sun Oct 18, 2009 6:59 am

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Postby GiCi » Sun Oct 18, 2009 7:29 am

Lyon,
You seems to forget the 100% positive correlation between MS and CCSVI found by Zamboni and the improvements reported following the liberation procedure. I am sure you have read many reports in this Forum.
It seems to me that you are sceptic about CCSVI because it is too good to be true!
I respect your position.
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Postby radeck » Sun Oct 18, 2009 8:19 am

GiCI, I agree with you and what I would call fascists are of course not those who critique or are skeptical toward Zamboni's theory (Lyon, not sure why you would misrepresent my response to Max this way?), but those who deride his theory and make it difficult for him to treat patients for venous insufficiency, just because these patients also happen to have MS.

Anyways guys, I'm all for making peace not war. We're here to better understand why we have the symptoms we do, and what we can do about it, not to peck at each other.
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Postby Lyon » Sun Oct 18, 2009 9:14 am

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Postby Lyon » Sun Oct 18, 2009 9:24 am

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Postby MrSuccess » Sun Oct 18, 2009 10:04 am

I'm not quite clear on 6max's message. It looks like bad news ???

I would like to draw everyone's attention to this fact :

I've read much debate about MS Societies and Neurologists and how important their input is. Or not.

I've read many messages about how 'Big Pharma ' is doing their all to keep people on their expensive drugs...... and how BP loves to crush any other solutions ....ie CCSVI.

I don't accept this notion .

Now here's the good news

In your corner is a BIG if not BIGGER opponent of Big Pharma. They are your insurance providers. They are the ones paying the bills. They are the ones most interested in reducing or eliminating the heavy cost of your medications.

These people are no fools. If a simple surgery can reduce or eliminate your need for expensive medications....it will be paid for by the insurance providers . These people are numbers crunchers.

You can bet they are extremely interested in CCSVI.

The CCSVI fix looks so promising. It would not surprise me at all if in the near future , MS patients will not be funded for medications without first having the stent/balloon procedure.

All those new CCSVI research projects ...WOW .....

Good work TIMS researchers.




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Postby Rokkit » Sun Oct 18, 2009 12:51 pm

Lyon wrote:If I'm wrong and MS diagnosis can suddenly be done with 100% accuracy, someone please explain why no one else involved with MS is aware of it.


Bob, I'm curious if you leveled the same criticism when research claimed 100% of MSers have EBV.

I'm also wondering if you could state the rate of misdiagnosis in CDMS so we could know whether misdiagnosis would likely exist in a group the size of Zamboni's.
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Postby Lyon » Sun Oct 18, 2009 1:27 pm

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Postby Rokkit » Sun Oct 18, 2009 4:03 pm

Lyon wrote:First, you must know that "clinically definite" only means "the best that we can do", with it in mind that no specific MS entity means no MS diagnosis is beyond reproach. For proof, you only need to look at the past and diagnosis which have been turned around after the fact and look to the many people on thisisms who are "in limbo" because no one can tell the with certainty whether they do or don't have MS. The uncertainty in MS diagnosis is certain.


It really doesn't matter how large the "in limbo" group is since they are clearly not CDMS. As for the group whose diagnosis has been "turned around", your argument would be stronger if we had any idea how large that group is. Recently, a case was posted on TIMS where MS was called a misdiagnosis after the problem was found to actually be a vascular issue that now looks like garden variety CCSVI. I hear stories of people diagnosed with MS who actually had Lyme disease, but I haven't heard any specifics on that so I wonder if that's more urban legend than anything else. My point is the actual percentage of bonafide misdiagnosed CDMS could well be very small.

It appears very likely that the study going on in Buffalo will affirm Zamboni's finding. All but a couple of people who have seen Dr Dake have had stenosis. Dr Simka is finding the same thing. No one has any idea the percentage of misdiagnosed CDMS. So the most likely explanation for this 100% paradox, is that the rate of misdiagnosed is actually not that big.
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Postby Lyon » Sun Oct 18, 2009 4:57 pm

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