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 Sat May 25, 2013 2:53 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 15 posts ] 
Author Message
PostPosted: Tue Jul 28, 2009 11:44 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4682
Location: southern California
http://www.fondazionehilarescere.org/pd ... RE-PRG.pdf

Some new universities involved include
Harvard, Stony Brook, University of Texas, and Georgetown.
!
cheer

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


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 1:07 pm 
Offline
Family Member
User avatar

Joined: Wed May 20, 2009 3:00 pm
Posts: 85
Location: North Haven, CT
Thats excellent news!!! It's so nice to see other major centers seriously looking into this.

_________________
javaneen


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 1:18 pm 
Offline
Family Elder
User avatar

Joined: Mon May 18, 2009 3:00 pm
Posts: 722
Location: CT
This is so exciting, especially the Harvard and Stony Brook connection. It brings hope that there will be treatment on the east coast.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 1:40 pm 
Offline
Family Elder

Joined: Tue Mar 07, 2006 4:00 pm
Posts: 215
Location: 75098
"This is so exciting, especially the" University of Texas "connection. It brings hope that there will be treatment" in the southwest.

Sorry to quote/echo you at an unfortunate moment bestadmom. I hope to obliterate this comment soon.........

_________________
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 2:29 pm 
Offline
Family Elder
User avatar

Joined: Thu Sep 23, 2004 3:00 pm
Posts: 2066
Location: USA
you guys are like twins with your responses :lol: but I had exactly the same response to the news.

I am so excited for everyone with MS that this is going foward with such strong support and interest from everywhere! Man newly diagnosed people, be they my peeps or anyone else's peeps will never have to go through what we have done...........

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 2:57 pm 
Offline
Family Elder
User avatar

Joined: Wed Jul 15, 2009 3:00 pm
Posts: 228
Location: Argentina
I think that one of the greatest strengths of the CCSVI theory is that it could be easily disproved or proved. You don't need years and years of following patients (see dirucotide failure) . You just gather a significant number of people and test for blood flow disturbances. Of course you need skilled technicians and this only proves - or not- that there is an association with MS. But proving association only, is a big step nevertheless.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 3:00 pm 
Offline
Getting to Know You...
User avatar

Joined: Thu Jun 11, 2009 3:00 pm
Posts: 23
My doc's at Georgetown--I'm all over him about this when I go in August!!


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 3:13 pm 
Offline
Family Elder
User avatar

Joined: Sun Jul 13, 2008 3:00 pm
Posts: 189
Elliott Frohman from Univ. Texas Southwestern Medical School in Dallas is a giant in the neuro world of MS. It's great he will be there


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 3:34 pm 
Offline
Family Elder
User avatar

Joined: Wed Jan 14, 2009 4:00 pm
Posts: 357
Location: Connecticut
I said to someone today (hi again JavaN :lol:) that I've felt like I've been on a roller coaster ride since January w/CCSVI. With these new names coming out today, this is one of the high days, for sure! As always, thanks for the info, Cheer.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 4:35 pm 
Offline
Family Elder
User avatar

Joined: Mon May 18, 2009 3:00 pm
Posts: 722
Location: CT
I hope the Stony Brook doc, who is the head of their ms center, buys into the concept. She takes my insurance!! Stony Brook and Jacobs Neurological are both part of the State University of NY so hopefully she will learn from Dr. Guttmann and advance the CCSVI theory.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 5:04 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4682
Location: southern California
I'm pretty stoked to see all the docs coming on board. Jeff said today he wants to send me over there for the conference...we'll see if I can snag an invite from Dr. Z. I'd love to take notes for the community :) and just be a fly on the wall.
I've been checking the Hilarescere website pretty regularly, and these new links keep showing up. Wow....
cheer

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


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 5:24 pm 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
cheerleader wrote:
we'll see if I can snag an invite from Dr. Z. I'd love to take notes for the community :) and just be a fly on the wall.


OMG I hope Dr. Z goes for that, that would be fabulous!

Rokkit


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 5:59 pm 
Offline
Family Elder
User avatar

Joined: Thu Sep 23, 2004 3:00 pm
Posts: 2066
Location: USA
Quote:
You don't need years and years of following patients (see dirucotide failure) . You just gather a significant number of people and test for blood flow disturbances. Of course you need skilled technicians and this only proves - or not- that there is an association with MS. But proving association only, is a big step nevertheless.


Yes I so agree with you on this. Not only that but a few groups such as those treated by Dr Dake with some in depth MRI work would do it very quickly too.

1. check lesions obviously
2. but also check perfusion and mean transit time, both of which are reduced in MS and both of which are attributed currently to MS inflammation. Proving this is primary pathology, not secondary to AI, will go a long way.
3. showing treated persons have improved blood flow--while this can't show that it causes MS it would surely support the notion that treatment is worth doing for the singular sake of circulation and this can be done in days on any individual, a few months for numbers of them.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 7:06 pm 
Offline
Family Member
User avatar

Joined: Wed Feb 20, 2008 4:00 pm
Posts: 69
prof8 wrote:
Elliott Frohman from Univ. Texas Southwestern Medical School in Dallas is a giant in the neuro world of MS. It's great he will be there


he used to be my neuro until he decided to just do research. I am in Dallas, Austin is too far way to drive unfprtatly. Surprised they are doing this at UT South western instead.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jul 28, 2009 7:19 pm 
Offline
Family Elder
User avatar

Joined: Sun Jun 01, 2008 3:00 pm
Posts: 791
Location: Mississippi
There is a Dr Gary R Cutter, Alabama listed as part of the Scientific Board. He works at UAB in Birmingham in the Center for Pediatric Onset Demyelinating Disease. My Neuro is a partner with this center only his is a satellite office for children and teens in North Alabama.

I asked him if he had heard about the research and he said he had and it looked promising, this was in May. I had no idea he had such a close connection to one of the Doctors involved.

This make it even more exciting for me.

Cat

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 15 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Abstracts from Bologna conference

cheerleader

5

1016

Tue Dec 01, 2009 6:58 pm

cheerleader View the latest post

There are no new unread posts for this topic. Sept 8, 2009 Bologna CCSVI conference- finalized notes

[ Go to pageGo to page: 1 ... 4, 5, 6 ]

cheerleader

75

13763

Fri Feb 12, 2010 5:54 pm

cheerleader View the latest post

There are no new unread posts for this topic. After Bologna- What can we do?

[ Go to pageGo to page: 1, 2, 3 ]

cheerleader

33

3402

Tue Sep 15, 2009 10:52 am

zap View the latest post

There are no new unread posts for this topic. Is there going to be a Bologna 2010?

Frank

0

662

Tue Jul 27, 2010 3:03 pm

Frank View the latest post

There are no new unread posts for this topic. Press release Bologna September 8th

[ Go to pageGo to page: 1, 2 ]

OriginalItalianPatient

15

3228

Sat Aug 15, 2009 5:34 am

Loobie View the latest post

 


Who is online

Users browsing this forum: EJC, newlywed4ever


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: