This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed May 22, 2013 1:48 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 59 posts ]  Go to page 1, 2, 3, 4  Next
Author Message
 Post subject: .
PostPosted: Mon Jan 24, 2011 2:47 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
.


Last edited by Lyon on Sun Nov 20, 2011 4:35 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 3:16 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
.


Last edited by Lyon on Sun Nov 20, 2011 4:35 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 3:53 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2564
Location: Kanata, Ontario, Canada
Quote:
"We need to work together to encourage a united message for the MS world," said Burks.


Too f-ing late.

I've never seen a stupider more bellicose example of working against working together than madman Rose and the self-glorifying nonsense he calls a blog.

If he ran things, people would work together only by accident, and be jailed as soon as he became aware of it.

Give us a break, and don't rub salt in by passing on the observation when you see any journalistic mistakes like quoting him. Quoting Osama Bin Laden would be more appropriate and enlightening.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 4:19 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
.


Last edited by Lyon on Sun Nov 20, 2011 4:35 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 4:43 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8507
Quote:
During the session, Zamboni suggested the evidence of the many observational studies might be sufficient to convince interventionalists and MS experts of the treatment benefits, but the perception right now is that only a randomized, controlled, clinical trial will be good enough to convince the neurological community. Dr Martin Leon (Columbia University, New York), a member of the panel discussing the treatment, agreed. While registries might work, a randomized, controlled trial is needed to convince everybody, he said

I am not sure why we need to convince the neurologists. "Registries might work"? Bring on the registries. I believe as the IRs gain skill at the CCSVI procedure, the neurologists will see the benefits in their own patients. Progressive patients are the most clinically convincing, if functions expected to be lost forever are regained.

Thanks for linking to this, Lyon. Lots of ISET info in there.


Top
 Profile  
 
PostPosted: Mon Jan 24, 2011 4:51 pm 
Offline
Volunteer Moderator
User avatar

Joined: Sat Nov 20, 2004 4:00 pm
Posts: 2715
Lyon wrote:
I hadn't noticed the lone comment earlier.

Dr Rose wrote:
# 1 of 1

January 24, 2011 02:37 (EST)



Colin Rose

"CCSVI" is junk science.
There are now at least four published studies using magnetic resonance angiography showing the "CCSVI" does not exist. Blockages in neck veins of any sort do not raise intracerebral pressure and, therefore, cannot cause brain pathology. The "liberation" treatment, dilation of internal jugular stenoses, is a very profitable scam.

No more time or money should be wasted on this charlatanry


Both you and Colin Rose should know better. Magnetic Resonance Angiography (MRA) examines the arteries. Of course it's not going to pick up any problems with the veins. That's pretty obvious. It's likely that Mr. Rose is just using this medical terminology in order to sound authoratative.

NHE


Top
 Profile  
 
 Post subject: ccsvi
PostPosted: Mon Jan 24, 2011 5:09 pm 
Offline
Family Elder
User avatar

Joined: Fri Dec 04, 2009 4:00 pm
Posts: 296
The topic of this thread is misleading. Interventionalists, such as Dr. Sclafani, are not treating MS, they are treating CCSVI.

z


Top
 Profile  
 
 Post subject: Re: ccsvi
PostPosted: Mon Jan 24, 2011 5:13 pm 
Offline
Family Elder
User avatar

Joined: Sun May 17, 2009 3:00 pm
Posts: 168
zinamaria wrote:
The topic of this thread is misleading. Interventionalists, such as Dr. Sclafani, are not treating MS, they are treating CCSVI.

z


where is the like button?


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 5:53 pm 
Offline
Family Elder
User avatar

Joined: Thu Dec 03, 2009 4:00 pm
Posts: 1236
Location: south western pa.
zinamaria-you said it right. if it happens to improve symtoms they named ms then it is a good thing also.

you would think the ones who have failed miserably in treating what they call ms would be thrilled that treating ccsvi helps some of us that have the symptoms they call ms. after all, haven't we all heard this stated to us some time or another, that we are here for you-we want to help.

ok, if they really want to help, why don't they put their money where their mouth is. who cares if it's a ir, a vasc. dr., a chiropractor or even a neuro. as long as there are positive results. oh, it slipped my mind, most neuro.'s feel it's their way or no way.












.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 6:17 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
.


Last edited by Lyon on Sun Nov 20, 2011 4:34 pm, edited 2 times in total.

Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 6:24 pm 
Offline
Family Elder
User avatar

Joined: Sun Jun 27, 2010 3:00 pm
Posts: 474
Location: Pittsburgh, PA USA
Who cares?

What's your point with this thread?

Ask the people around the world (thousands now) who have had CCSVI liberation ... see how many would recommend it to others with venous issues and MS ...

I think you'll find a bunch of very satisfied customers - and customer feedback - regardless of "GREAT" improvements in MS symptoms or not ...

I think that's the true test. Those with "MS" who were liberated.

Why do you feel YOU should tell people what to do? Considering you have no experience with MS, in combination with CCSVI, and seem to dismiss everyone who has experience with both ... ???

Just curious .... maybe I should change my name to "curious"?


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 6:26 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8507
Lyon wrote:
Consider that the following is taken straight from the CCSVI.org site, it's not believable that trying to distance CCSVI from MS is anything more than a smoke screen

To me it's logical to separate the two.

In varicose veins, when they cause skin lesions, you don't say that the IR is treating skin lesions. No, the IR treats the varicose veins.

So with CCSVI, the IR is not treating the lesions of the CNS that constitute MS. No, the IR treats the blockages known as CCSVI.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 7:50 pm 
Offline
Family Elder
User avatar

Joined: Wed Nov 05, 2008 4:00 pm
Posts: 1323
CCSVIhusband wrote:
Who cares?

What's your point with this thread?

Ask the people around the world (thousands now) who have had CCSVI liberation ... see how many would recommend it to others with venous issues and MS ...

I think you'll find a bunch of very satisfied customers - and customer feedback - regardless of "GREAT" improvements in MS symptoms or not ...

I think that's the true test. Those with "MS" who were liberated.

Why do you feel YOU should tell people what to do? Considering you have no experience with MS, in combination with CCSVI, and seem to dismiss everyone who has experience with both ... ???

Just curious .... maybe I should change my name to "curious"?


If we want to find success stories we can click on the many posted stories on the CCSVI thread however if we want to read about the cases where "liberation" did nothing there is a single thread at the top of the forum where people are "allowed" to post their results. No one can make heads or tails about what is called CCSVI and the liberation procedure because of the miracle stories of people walking after having no use of their legs for tens years, people running marathons after not being able to run 100 yards, etc. that are skewing reality. The researchers involved hope that the liberation procedure helps alleviate some symptoms of MS, specifically fatigue and cog fog. It looks like the myth of a "miraculous cure" is being perpetuated through the internet and it is a shame because if there is anything positive about being treated for CCSVI how in the world will we ever know????


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 24, 2011 8:17 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
Bob, Scorpion, whoever wants to hear a doctor who is studying this explain what we know and what we don't know--

Please, listen to Dr. Michael Dake discuss this in our new video--

Quote:
‎"In my view, venous obstruction is a promoter for MS, like many other things are promoters for MS .... but what has people excited (about CCSVI) is that this promoter is reversible."


www.ccsvi.org

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Top
 Profile  
 
PostPosted: Mon Jan 24, 2011 9:22 pm 
NHE wrote:
Lyon wrote:
I hadn't noticed the lone comment earlier.

Dr Rose wrote:
# 1 of 1

January 24, 2011 02:37 (EST)



Colin Rose

"CCSVI" is junk science.
There are now at least four published studies using magnetic resonance angiography showing the "CCSVI" does not exist. Blockages in neck veins of any sort do not raise intracerebral pressure and, therefore, cannot cause brain pathology. The "liberation" treatment, dilation of internal jugular stenoses, is a very profitable scam.

No more time or money should be wasted on this charlatanry


Both you and Colin Rose should know better. Magnetic Resonance Angiography (MRA) examines the arteries. Of course it's not going to pick up any problems with the veins. That's pretty obvious. It's likely that Mr. Rose is just using this medical terminology in order to sound authoratative.

NHE


Professionals in the field seem to be able to use the MRA/MRV thing interchangeably, as in this article: http://www.aetna.com/cpb/medical/data/1_99/0094.html
which to me, implies that it is the same technology and that it probably would pick up problems with the veins. I think what matters is what your specifically looking at and not how you're looking at it.

Many people still talk about angioplasty in CCSVI (e.g. "Angioplasty for All") Shouldn't they know better, being self professed CCSVI specialists and all?


Top
  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 59 posts ]  Go to page 1, 2, 3, 4  Next

All times are UTC - 8 hours [ DST ]


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: