This Is MS Multiple Sclerosis Knowledge & Support Community

Another Canadian neuro/pharma doc calls Interventional Radiologists treating CCSVI quacks.

http://www.lfpress.com/comment/2010/07/26/14828396.html

What's wrong with these guys up north? Something in the water?

Brian

Maybe the alliance will take these types to task. It would be nice if science based rebuttals were used and the party putting out flaming erroneous commentaries was asked to respond.
I sure have had my fill of the negs...great attitude this particular guy has...I am sure this info correcting will take years to get as far as a reluctant half hearted neuro support. Time is not our most plentiful resource...I am sure they know that part.

Sorry, but the before and after evidence now viewable on online are very telling. Yes, this does not work for all but yes, for SOME it does.

DUH there needs to b proper clinical research. So, ok, do it, and look it is being done.

However for those suffering NOW take your chances and get it DONE, bc u never know it might work for you.

....actually, I think the question about iron is a good one.

Why don't the excess iron deposits show up on an MRI?

(I would ask in Dr. Sclafani's thread, but my question would get lost in there.)

thornyrose76 wrote:Sorry, but the before and after evidence now viewable on online are very telling. Yes, this does not work for all but yes, for SOME it does.

DUH there needs to b proper clinical research. So, ok, do it, and look it is being done.

However for those suffering NOW take your chances and get it DONE, bc u never know it might work for you.

This has been, and will continue to be a major conflict in the CCSVI world. Attempting to take cold, scientific studies (which of course are needed and warranted), and applying them to individual situations, or vice versa, taking personal situations and making them scientifically meaningful. The two rarely meet in the middle, because they share little common ground. The things done at the institutional level are beyond the reach of the average MS sufferer, and the institutional level rarely has a clue what the average MS sufferer is experiencing on a day to day basis. I'm not talking blind checkmarks on a chart, I mean really experiencing which of course we all know such experience can only be gained by walking in those shoes to use a very bad analogy.

To me, what this means, is one has to arrive at their own decision what this all means, and not make any decision lightly whether to pursue or wait. Both have ramifications. Just like stents vs. angio, not necessarily enemy combatants , just different choices, both with their own panoply of ramifications. To push one, or negate the other, is the height of foolishness.

I would say however, that if someone is wavering and doesn't know which way to turn or what avenue to pursue, the best advice is to wait, hold on, because the longer one does that, the better choices there will be available, the more guinea pigs will have been put on the wheel and tested, because after all is said and done, that's what most MS patients are, well patients in general, a walking talking test tube, for drugs or anything else.
Mark

codefellow wrote:....actually, I think the question about iron is a good one.

Why don't the excess iron deposits show up on an MRI?

(I would ask in Dr. Sclafani's thread, but my question would get lost in there.)

I think they do show up on the new Tesla7 MRIs. This is what Dr. Haacke's research was all about prior to ccsvi. Check the research thread....

This is another ill-informed judgment, this time on 'unscrupulous quacks' like presumably all of the doctors performing this procedure in upwards of 20 countries throughout the world. We'd ride them out of town but we don't have enough rails.

People who have nothing better than this to say (no, we do no need more trials to prove its efficacy, especially those designed by this guy), like my mother used to say, should just not say anything.

Thank goodness we have more than this guy has ever heard of.

Actually, the MRI scan I had at BNAC shows that my brain is very high in iron !!! I was given a graph that shows my iron vs all the people with MS and all the controls who had been tested at BNAC at the time I was tested in May. It was clear that people with MS have much more iron. The data was displayed by age, and I was even very high for my age !!!! It is easy to criticize when you have no data at all.

ozarkcanoer

Interestingly Dr Space, the author of the comment, is a professor of neurology and clinical pharmacology and director of a stroke prevention & atherosclerosis research centre. Unfortunately, I don't think he is familiar with the work of Dr Haacke.

Dr Haacke has used susceptibility weighted imaging (SWI), an MRI technique to image veins and tissue iron. He has some presentations showing iron stores in people with MS.

See:
http://www.ms-mri.com/presentations.php

and here
http://tinyurl.com/35z8nz7

I don't find that article all that negative. Comparing to others i ve read... Just full of mistakes.
But you got to be a jack ass to dispute the existence of excessive iron in the brains of some of us when all those pics from Haacke are all over the internet for everyone to see.

http://www.thisisms.com/ftopic-12225-da ... sc-60.html
look for 1eye's post.

Like Sou once said, opinions are like assholes. Everybody has one. Especially neuros who clearly have no idea what they are talking about when it comes down to CCSVI, may have more than one. Opinions, not assholes. Then again, with that alien behavior of theirs, everything is possible.

There is an interesting paper I read some time ago- I will have to find the link to post on this forum.

My notes from the paper (written for ultrasound technicians) indicate that
"increasingly heavier T2 weighting (PD<FLAIR<T2) shows increasingly hyposensitive T2 at the periphery due to magnetic susceptibility of excess iron."

So perhaps we could better detect iron in the brain if we were using more sensitive and heavier weighted MRI protocols, yes?

Hey, if its just a placebo- gimme that placebo. I'm sure I'd do great on it!
Wouldn't it be a teeny bit unethical to do the trials being suggested (i.e. false stenting)? eyebrow

Dr. Spence refers to the venous abnormalities as being inside the brain, and relates it to stroke--his specialty, saying that CCSVI is not related to MS. He has obviously not read any of the research.

Dr. Spence in his own words---
http://www.lfpress.com/news/london/2010 ... 35416.html

“For sure we would all love it to be true, it would be great to have a new treatment for multiple sclerosis, but there are a whole bunch of problems.”

One of the problems with the theory that multiple sclerosis is connected to blocked veins is that narrowed veins in the brain can cause strokes. But the part of the brain affected by strokes is not the same part affected by MS, Spence said.

In addition, many MS lesions are found in the spinal cord, not in the brain, so the narrowing of veins in the brain is not going to cause those lesions, he said.

“The theory is implausible because it doesn’t bear any relationship to what we already know about these things,” he said. “Everything we know about MS so far indicates it is an inflammatory condition.”

It's not INSIDE the brain. Dr. Zamboni found EXTRA-cranial stenosis in the jugular and azygos veins. Very, very different than the venous strokes Dr. Spence treats. If only doctors would simply read the research before shooting off their pie holes. sigh. I sent him a very respectful e-mail, suggesting he look at the new CCSVI Alliance website, where he can read the research.
www.ccsvi.org

cheer