Interesting Observation

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Arcee
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Post by Arcee »

Unfortunately, I'm not aware that any amendment to the U.S. health care legislation has been proposed for CCSVI research.
Well anyone who knows what actually is in that piece of legislation should be commended :wink: I actually was thinking that, since no one knows how this is all going to play out, there could very well be a need for those dedicated MR Centers to handle all the tests that the exploring (and maybe treatment) would require. And the funds for those centers would not come from the government but from monies raised from any number of sources. And if there is a regional center in your Congressional district, that would draw tons of visitors who need to get a meal and maybe even stay over night. So that is another enticing angle for a member of Congress to know about this issue and keep her or his eyes and ears open to how to foster something like this. That is a ribbon-cutting ceremony many would want to attend...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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patientx
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Post by patientx »

Between Dake, Zamboni, Simka, a couple in the UK and France, we have much evidence of decreased disability, more so than otherwise.
Really? Could you give examples of this? The only one who has documented anything is Zamboni, and his numbers don't really make sense.
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patientx
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Post by patientx »

Lyon wrote:Someone responded that it had indeed been proven that iron kills brain cells. Since that time I've been on a mission to find proof that iron kills brain cells and a few days ago I was able to find some evidence that iron "might" kill brain cells http://www.webmd.com/multiple-sclerosis ... n-in-brain and I found a recent paper which said that iron "seemed" to kill brain cells in the lab setting.
Boy, in posting this, I feel like I'm trying to be heard at one of those town hall meetings...

'Might" is the right word, Bob. Because, as the article states:
t's not yet clear that the iron is the cause of the brain damage. It could be that dying brain cells leave a trail of iron behind.
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Johnson
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Post by Johnson »

patientx wrote:
Between Dake, Zamboni, Simka, a couple in the UK and France, we have much evidence of decreased disability, more so than otherwise.
Really? Could you give examples of this? The only one who has documented anything is Zamboni, and his numbers don't really make sense.
There is a fair bit of documentation right here on this site - Jeff Beal, CureIous, Erika, Edser, Rhonda, off the top of my head, - of decreased disability. Or, if that is too assumptive or provocative, decreased MS symptoms.
My name is not really Johnson. MSed up since 1993
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Brainteaser
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Post by Brainteaser »

XX
Last edited by Brainteaser on Sat Aug 09, 2014 6:06 pm, edited 1 time in total.
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Rose2
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Count Me!

Post by Rose2 »

Johsnon,
Count me! Rose2!!
Pleeze add me to the list of those who feel better.
I am exactly 2 months since my Stents AND Angioplasty, Dr. Dake did both and for some reason everyone seems to write like he does not.
Dr. Dake looks at areas that need treatment and then decides, at least that is my story.
Ok, and NOW I feel so good, I spent my day out with the rest of the world shopping at BestBuy and the mall and all those places.
No wheelchair. Just my legs and and attitude. Ho Ho Ho!!!
I am not prepared to argue nor do I want to argue.
I do believe (sorry for the word!) I have MS.
I do believe I had areas of venous obstructions that were treated and opened.
I do believe I feel like a different person. After 10 years of MS, I am in a position to judge myself. and Yes, it is a miracle. and this I believe.
I do believe this is a short time and I do not know the future.
But I also believe I would do it all again in a minute even if I were to only have these last 2 months again with a clear head.
I also believe I would not push anyone to do this. I have given the information available to others for them to research and decide.
SO COUNT ME, TOO! Rose2
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Johnson
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Post by Johnson »

Thanks Rose2. Your story is very important too, as are all of those that I could not bring to mind immediately.

Anecdotal evidence is still evidence, and is, I think, acceptable for consideration, even in scientific studies.

I have not read yet that "liberation" was a waste of time and effort.
My name is not really Johnson. MSed up since 1993
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Robnl
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Post by Robnl »

Rose... :lol: :lol: :lol: :lol:

The more treated people show this kind of 'evidence' the better

Rob
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magoo
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Post by magoo »

Yea Rose!!!!!!!!!! So happy to hear such a wonderful report from you!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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