cheer : low number of CCSVI diagnoses..... !!??

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

Postby Zeureka » Thu Jan 28, 2010 7:36 am

mangio wrote:Ozarkcanoer,
After reading some posts yesterday I became quite worried about
some of the findings being reported. I wonder if the people being
tested at various locations are of such different backgrounds that
this could be altering some of the results? Just thinking aloud...txs

Mangio, I fully understand your thoughts...as if anyone was skeptical before, it was me.

But when thinking this, do you mean those who perform the tests - or those that are tested?

The day I was there to get my eco-color-doppler test at Simka's place, there was me, a UK and a US person. We all got CCSVI diagnosed. So I would say we had geographical different backgrounds. It's just that the doctor who did the test, knew how and where to search, due to his lengthy experience on so many doppler exams on MS patients already (finding the problem mostly in similar locations).

And believe me: I went in that room expecting he would not find anything, as my symptoms are mild... I went to Poland since simply needed to know if all this MS-CCSVI story was true! And I only believed it after tested on myself...

I also saw it with my own eyes. Oh well, was not soo easy to see the "spaghetti between the macaroni" (loved that expression :wink:) , but had studied Zamboni's doppler pictures before. So understood what the red artery and blue jugular signals meant when Simka explained to me (stopping the screen). He only explained to me because I asked if could see pictures. He understood I was skeptical and was very cooperative to show/explain. Find me another doctor like this!
Last edited by Zeureka on Thu Jan 28, 2010 7:52 am, edited 1 time in total.
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Postby Perky » Thu Jan 28, 2010 7:45 am

Fiddler,
I'm sure I read somewhere that one of the control group (not necessarily Zamboni's, may have been another trial) of non MSers was found to have CCSVI-type narrowing, which led to the person getting an MRI which showed lesions and later he/she was diagnosed with MS? But I can't find any reference to this anywhere - hope I haven't dreamt it.
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Postby berriesarenice » Thu Jan 28, 2010 7:51 am

Perky, you may be thinking of Sharon's daughter, who was tested at Stanford.
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Postby Zeureka » Thu Jan 28, 2010 7:56 am

Oh, that's interesting. Zamboni reported about similar findings in kids from Sardinia (where MS is very common)
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Postby lionheart » Thu Jan 28, 2010 8:24 am

Hi, Zeureka!
Did you happen to ask the doctor/s why with some people those findings are not found :) ?

What about them? Are they considered not to have MS for some reason?

Aren't you all interested? It seems somehow inconsistent to me. Some have it, some don't, but all of them have MS...

The explanation Fiddler provided does not satisfy me...What I am interested to learn is what a doctor dedicated to this theory would say. Perhaps some of you have talked to their docs about it...?
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Postby cah » Thu Jan 28, 2010 8:45 am

It's just guessing, but maybe there are other, much more rare ways of how reflux can show up or how iron can accumulate in the brain, as through vein stenosis. It really would be very interesting to know if those PwMS without CCSVI still have too much iron in their brain.

But frankly, I think the most likely explanation of a negative result at the moment is wrong procedure, lack of experience or things like that.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby ozarkcanoer » Thu Jan 28, 2010 10:12 am

Lyon, Buffalo is blinded so there is no preconception about MSers vs non MSers. So their results will be quite interesting.

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Postby sou » Thu Jan 28, 2010 10:26 am

annad wrote:I'm one of those with a negative MRV and it's hard to decide what to do next. I strongly believe in CCSVI and MS but I'm starting to think that unless doctors and radiologists know exactly what they are doing, it's a waste of my time and energy oh and yes, money. I don't want to wait however, until years go by and all the studies etc. have been completed.


I had a negative azygos MRV, too, but my venogram revealed a terrible stenosis of the azygos. Don't ever ever ever give up. Uninformed physicias come to false conclusions.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Lyon » Thu Jan 28, 2010 10:31 am

.
Last edited by Lyon on Mon Nov 21, 2011 8:45 pm, edited 1 time in total.
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Postby mangio » Thu Jan 28, 2010 11:00 am

Zeureka,
Thankyou very much for that great post. :)
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Postby Mechanicallyinclined » Thu Jan 28, 2010 11:04 am

Cheer

You must feel a little frustrated at times I'm sure. I hear you clearly stating what people should do and what to expect. I notice alot that the message isn't getting through.
People must understand this. There is not necessarily one test only that will confirm your problem. This depends on exactly where the problem is. There are different ways of diagnosing the problem. The person testing must know what they are looking for. To do that they need the proper protocol for testing.

Also, most places in North America do have Doppler ultrasound, but it is not intracranial doppler ultrasound. These are all part of the reason that False creek is getting negative results. If you are lucky enough to get tested somewhere, the testing protocol must be clear to the person doing the imagry or it could be a total waste of time. Just because nothing is found in a test, it doesn't mean you don't have a problem. Ther doctor or radiologist may not know what he is really looking for or may not be testing properly.

Cheerleader knows what the heck she is talking about people. This is just a huge learning curve for our medical system. I am confident that vascular people are paying attention to this. They just need time to learn how to go about this properly to get a reasonable success rate diagnosing. Some problems are easily found. Others need to be found through a different method of testing. This isn't going to happen on a large scale overnight, but we are heading in the right direction. I thnk there will be alot of information released in the coming month or two that will give this effort a bigger kickstart.

I don't believe in this only because my desire for better health. I believe in it because it makes so much sense to me. If you want to be proactive you must educate yourself so you know what to present to the vascular specialist you are appoaching. Just going to him and asking for help isn't enough unless he or she is familiar with what is going on.
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Postby Zeureka » Thu Jan 28, 2010 11:13 am

lionheart wrote:Hi, Zeureka!
Did you happen to ask the doctor/s why with some people those findings are not found :) ?

What about them? Are they considered not to have MS for some reason?

Aren't you all interested? It seems somehow inconsistent to me. Some have it, some don't, but all of them have MS...

The explanation Fiddler provided does not satisfy me...What I am interested to learn is what a doctor dedicated to this theory would say. Perhaps some of you have talked to their docs about it...?


Hi Lionheart,

Actually remember Zamboni saying in the famous CANADA video "I found it in all MS patients." The interviewer lady replying back: ALL of them? YES, ALL !

In Zambonis research paper, however, I think they say 95%.

And also, when asked Simka, he told me in principle that he found it in all patients, but of course there are always small exceptions to the rule...

The issue that was criticised by an Italian neurologist at a conference in Rome (also watched a video) was that Zamboni said he found CCSVI in 95% of MS cases, but NONE in people without MS. The Neurologist criticised, that he had already seen abnormal vene issues on MRI scans, when looking for other brain issues in non-MSers. So he questioned that CCSVI was linked to ONLY people with MS. And that Zambonis studies would be too small as to exclude CCSVI also in non-MSers...so Buffalo will hopefully confirm sthg...

So to be short: Who these 5% are and why, sorry, I havn't got the answer either. I thought to be one of them, and do not really know if to call myself lucky or not that I have a jugular vein blockage now :lol:

Steffi
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Postby Billmeik » Thu Jan 28, 2010 11:39 am

It's generally thought that while 1 in 1000 people have MS, more like 50 in 1000 have lesions. In fact if the people are over 50 years old, its higher.

I wonder if all those people with lesions but no MS symptoms have CCSVI?
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Postby Zeureka » Thu Jan 28, 2010 11:44 am

Billmeik, good point. Maybe some have "benign MS" (so the factors in their genes to potentially develop it) without developing MS in their lives due to other lucky environmental circumstances? This is in a way illustrated by identical twins. There are idental twins, one has MS, the other not.

That would be interesting to test such identical twins on CCSVI ! Anyone here has an identical twin sister/brother without MS to test this :wink:? Will BOTH have CCSVI? Also the one that did not develop any MS symptoms?

And if so, will they have the same type of vein occlusion?

According to the recent consensus document the vein issue might develop in the embryonic phase. But does it then progress further due to other factors?

Steffi
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Postby lionheart » Thu Jan 28, 2010 12:30 pm

One thing is clear, there is a lot more to go!

But the good point is that almost all who have undergone the liberation procedure are feeling better. And that the issue has been filed for clinical trials (it's been, am I right).
I really hope this will be the breakthrough we all have been waiting for!

I wish luck to all who have and will go for it!

I guess, I could visit the doctor in my country who's up to this matter and put all questions I have to him...I'll let you know about the answers and results.
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