Interesting Observation

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

Postby Arcee » Sun Dec 20, 2009 8:08 am

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
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

Advertisement

Postby patientx » Sun Dec 20, 2009 2:25 pm

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.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm

Postby patientx » Sun Dec 20, 2009 2:48 pm

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.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm

Postby Johnson » Sun Dec 20, 2009 8:03 pm

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
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Brainteaser » Sun Dec 20, 2009 9:38 pm

I agree with you MarkW - if we as individuals can do our best to get tested and treated for CCSVI, ASAP then collectively this should turn into a pretty powerful rationale for the CCSVI-MS connection, ultimately (hopefully) gaining widespread acceptance.

An emotive crash through crusade is unlikely to succeed in the short-term. This is the stuff of movies but is not the way of the real world. No one likes to be told they're wrong, including neuros, governments and drug coys etc. Slow and steady is likely to be more successful than a full frontal attack.

As a parallel - what about climate change? Sure, we all 'agree' that something needs to be done, but it's taking time to get anything going - too many vested interests, holes in the evidence and too much emotion.

For clarification, I'm not a member of the redneck skeptics lobby but can identify with the pragmatic approach which I think you are suggesting, Mark.

Phil
User avatar
Brainteaser
Family Elder
 
Posts: 432
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

Count Me!

Postby Rose2 » Sun Dec 20, 2009 11:17 pm

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
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 3:00 pm
Location: SF area

Postby Johnson » Sun Dec 20, 2009 11:34 pm

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
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Robnl » Mon Dec 21, 2009 2:18 am

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

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

Rob
User avatar
Robnl
Family Elder
 
Posts: 423
Joined: Sun Nov 08, 2009 4:00 pm

Postby magoo » Mon Dec 21, 2009 7:00 am

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.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users