This Is MS Multiple Sclerosis Community: Knowledge & Support

It seems that many of us have already undergone mrv and doppler testing which came out "negative". On the other hand others found blockage inside veins otherwise physiological. But this was only possible with a venography which i think is invasive. And from what i can understand it s only logical to spot membranes or other defects inside the veins once you get in there. MRV shows the outside and doppler can spot reflux only under a trained eye.This is why i strongly believe that one has to be examined by CCSVI experts so to speak, or wait until this runs under a worlwide official protocol somehow. Yeah, right.

My guess is that Italy and Poland are the places to get tested so far. They are convinced that ccsvi is the problem and they will do everything to locate it. And by excluding Italy, Poland is whats left Dr Simka must have gone crazy...

Am i wrong? I dont want to get a false negative result. As someone in here already said i d accept it only from a doctor who really knows what he is doing.

youre right!

what i used to tell newbies:
the radiologist mustknow what to look for!
a tech guy eating his sandwiches wont find anything...
only if you have something really messed up with your veins

alex

MRV is Magnetic Resonance Venography. It is not invasive but a contrast medium (injection into a vein) is used, sometimes, to give better definition of the blood vessel. A radiologist (specialist doctor) would be able to tell you if they have the experience to view neck and trunk veins on an MRV.

Colour Doppler Ultrasound is not usually used on the neck veins so a sonograher (operator) will usually need training and/or practise to get accurate results. See Prof Zamboni's comments on this.

If pwMS have to travel to two or maybe five centres worldwide, its going to take ages for the CCSVI and MS to become accepted. If a radiologist is prepared to study the papers with an open mind then good results should be obtained. Getting a local MRV helps the CCSVI cause, if you can find an open minded radiologist in Greece.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Flow quantification can also be attained with an MRV, it is not the realm of doppler only.

Dr Haake has proposed a protocol, the problem is finding a centre capable and willing to perform it. If I am reading it right, it includes flow measurements as well.

Cos,

I had dopplers in Italy, venogram in Australia and dopplers, MRV and venogram in Poland, all within 3 months. The results were all different. The venogram in Poland was relied upon for my treatment and they stented a jugular valve.

This stuff is in its infancy. People are doing the best they can under the circumstances. However, it's going to take a while for a recognised testing and treatment path to be established.

I don't think I'm alone - others have had strange results, too. I think we need to keep going with trial and error - but not to get our hopes too high, nor on the other hand, get too despondent.

Phil

I did a post awhile back on OB/GYN's (there was a paper), and the trouble they have getting consistent results on fetal ultrasounds, and how so many MD's (not your local test facility) do these for a living and aren't even operating the machines correctly.

Think about that, like my wife, she's had three so far in her pregnancy by the best damn OB/GYN on the planet (he's had first hands on my first two, and now for our third), so gee that's like MILLIONS and MILLIONS of ultrasounds a year on just pregnant women, I do the math in my head, and hope that more than a couple thousand are competent for this in the very near future. Sorry cant find the post where I posted the paper, it was a real eye opener as to the shortcomings in the system, specific to ultrasound.

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap