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 Fri May 17, 2013 11:28 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 15 posts ] 
Author Message
PostPosted: Sat Jan 28, 2012 6:12 pm 
Offline
Family Elder
User avatar

Joined: Wed Apr 28, 2010 3:00 pm
Posts: 178
Location: Ontario, Canada
dismayed to hear this statement from top neurologist at St. Mike's hospital in Toronto....they always find 2 qualifying factors, according to him......skepticism running rampant...


Top
 Profile  
 
PostPosted: Sat Jan 28, 2012 6:36 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
Are they doing some kind of imaging study there or is he talking about what they're finding during normal operations?


Top
 Profile  
 
PostPosted: Sat Jan 28, 2012 6:37 pm 
Offline
Family Elder
User avatar

Joined: Wed Apr 28, 2010 3:00 pm
Posts: 178
Location: Ontario, Canada
he's saying that anybody that goes there to be tested for CCSVI will test positive


Top
 Profile  
 
PostPosted: Sat Jan 28, 2012 6:56 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
OK thanks. That allows for a lot of possibilities though and it makes you wonder what specifically that neuro is hinting.


Top
 Profile  
 
PostPosted: Sat Jan 28, 2012 8:08 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
that's simply not true. I, personally, know of two individuals w/MS who were found negative for CCSVI at Barrie Imaging. I'm sure there are others.

Here is Dr. McDonald from Barrie Imaging discussing the research and the specificities and difficulties with doppler diagnosis at Dr. Sclafani's symposium.
He is a knowledgeable and dedicated doctor. He does not treat, but he tests pre and post venoplasty.
http://www.youtube.com/watch?v=YBWUXQX3Tto

cheer

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


Top
 Profile  
 
PostPosted: Sat Jan 28, 2012 9:22 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
I've had two exams there, results: one of each, negative at three months and positive at six months, which turned out to be more like 9, because of snow storms and what-not, Barrie being some distance away. I think the neurologists mean to deny the validity of the test, the tester, the condition, and everybody's honesty into the bargain. Except for the patient's. It's a hard world out there. You have to be careful about who you believe. I'm frankly sick of being treated like a pawn who doesn't know enough to avoid shysters and who doesn't pay any attention to his doctor's credentials. But then, it could be my "MS". :wink:

Dr. McDonald has testified in the Parliament of Canada on CCSVI to a room full of people, including researchers, scientists, politicians, as well as other doctors, the MS Society, and the CCSVI sufferers themselves. He is on the record, in Hansard, the verbatim transcript of the Canadian Parliament. It's on the web. I don't think the citizens of Barrie would be crowding his waiting-room the way they do, it he was not on the level. He doesn't falsify results, or fail to see what is in front of him. Nor, I believe, do his technicians. They have all learned the tests in Ferrara.

_________________
"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  
 
PostPosted: Sat Jan 28, 2012 9:51 pm 
Offline
Family Elder
User avatar

Joined: Wed Apr 28, 2010 3:00 pm
Posts: 178
Location: Ontario, Canada
I don't for one minute think that there is some sort of scam going on at Barrie....that is why we went there.... I believe that Dr. McDonald and his staff are the most qualified in this region to do the testing.....but obviously all these positive tests for CCSVI have now been classified as "suspicious" to some...that is what he was getting at......very skeptical of the whole theory......most of
the improvements are very subjective, hard to measure accurately, eg. brain fog, warm extremities, etc.......just repeating what he said.


Top
 Profile  
 
PostPosted: Sun Jan 29, 2012 9:40 am 
Offline
Family Elder
User avatar

Joined: Fri Mar 12, 2010 4:00 pm
Posts: 2977
Location: Brooklyn, New York
It's nearly always positive when you go to brooklyn too. Only 1 PwMS had all veins normal in two years with use of IVUS. ONLY NEGATIVES HAVE BEEN PATIENTS UNDERGOING ANGIOGRAPHY.WITHOUT A DIAGNOSIS OF MS.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com


Top
 Profile  
 
PostPosted: Sun Jan 29, 2012 9:53 am 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
drsclafani wrote:
It's nearly always positive when you go to brooklyn too. Only 1 PwMS had all veins normal in two years with use of IVUS. ONLY NEGATIVES HAVE BEEN PATIENTS UNDERGOING ANGIOGRAPHY.WITHOUT A DIAGNOSIS OF MS.

Well that's a situation of interest in itself. What is the number of people without MS who have gone through Brooklyn after having been tested with IVUS and a negative finding?


Top
 Profile  
 
PostPosted: Sun Jan 29, 2012 12:15 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8505
Lyon wrote:
drsclafani wrote:
It's nearly always positive when you go to brooklyn too. Only 1 PwMS had all veins normal in two years with use of IVUS. ONLY NEGATIVES HAVE BEEN PATIENTS UNDERGOING ANGIOGRAPHY.WITHOUT A DIAGNOSIS OF MS.

Well that's a situation of interest in itself. What is the number of people without MS who have gone through Brooklyn after having been tested with IVUS and a negative finding?

IVUS is used during the procedure itself, so I would say the only people who have gone through Brooklyn AFTER having been tested by IVUS would be people getting secondary procedures after restenosis after the first procedure.

I believe the one pwMS that he references, who had negative findings upon angiography, had actually met the criteria for CCSVI based on doppler ultrasound pre-imaging. Dr. Cumming has said that he finds the doppler imaging to be accurate to what he sees upon angiography about 80% of the time. In this case it wasn't.

What Dr. Sclafani reports is of interest, and gets me thinking about specificity and sensitivity, such as the research saying that CCSVI is not specific to MS patients and only MS patients and therefore not a cause...unless it is specific and sensitive, and therefore is a cause. Research based on imprecise imaging gives me a headache. Would rather know one way or the other.


Top
 Profile  
 
PostPosted: Sun Jan 29, 2012 2:50 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
drsclafani wrote:
It's nearly always positive when you go to brooklyn too. Only 1 PwMS had all veins normal in two years with use of IVUS. ONLY NEGATIVES HAVE BEEN PATIENTS UNDERGOING ANGIOGRAPHY.WITHOUT A DIAGNOSIS OF MS.

Dr Sclafani,
Well that's a situation of interest in itself. What is the number of people without MS who have gone through Brooklyn after having been tested with IVUS and a negative finding?


Top
 Profile  
 
PostPosted: Sun Jan 29, 2012 5:28 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8505
I assume we can all continue to discuss! Lol!
If you're serious about your question, Lyon, I encourage you to post in Dr. Sclafani's thread directly if you do not hear back from him here.
And welcome back to TiMS.


Top
 Profile  
 
PostPosted: Tue Jan 31, 2012 10:05 am 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
Cece wrote:
... Dr. Cumming has said that he finds the doppler imaging to be accurate to what he sees upon angiography about 80% of the time. ...


Diagnosis of MS is suspect, itself. Diagnosis of CCSVI by Doppler only is also somewhat (20%?) suspect. Having the procedure or not should be up to the patient, after whatever tests they require to be convinced one way or the other, just as it should be up to the physician whether or not to treat them. Physicians who do unnecessary stuff for fast money, are soon discovered, and not always by Colleges of Physicians and Surgeons. Some of them end up on TV unwillingly, and worse, especially when they prey on the sick and dying.

_________________
"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  
 
PostPosted: Fri Feb 10, 2012 6:40 am 
Offline
Family Elder
User avatar

Joined: Wed Apr 28, 2010 3:00 pm
Posts: 178
Location: Ontario, Canada
all these positive results should just add credence to the CCSVI theory instead of being met with skepticism.....


Top
 Profile  
 
PostPosted: Fri Feb 10, 2012 7:44 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8505
http://www.brandonsun.com/lifestyles/br ... html?thx=y
Quote:
"You need to be trained properly. It's a very specific technique," said Angela Legace, chief vascular stenographer at Barrie Vascular Imaging in Barrie, Ont. She trained in Italy with Zamboni and was invited back to help teach others.

Legace has probably scanned as many as 5,000 people before treatment and afterwards, people who have travelled from across Canada for diagnosis or followup care. They have all said they wished they could get care in their home provinces, she said.

5000! The numbers do add up. We are an army....


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. 18 months of "progress" in the 7 MS Society imaging studies

Cece

7

793

Mon Jul 09, 2012 3:15 pm

1eye View the latest post

There are no new unread posts for this topic. Barrie Vascular Imaging

flipflopper

9

2386

Fri Jun 11, 2010 8:54 am

mangio View the latest post

There are no new unread posts for this topic. Barrie Vascular imaging Costs + False Creek

thornyrose76

3

1615

Tue Jul 06, 2010 11:40 am

thornyrose76 View the latest post

There are no new unread posts for this topic. "Alzheimer’s – tight neck muscles and the carotid artery"

HappyPoet

2

365

Mon Feb 11, 2013 11:56 am

HappyPoet View the latest post

There are no new unread posts for this topic. Divinyls singer "I Touch Myself" Chrissy Amphlett

Cece

5

484

Tue May 14, 2013 7:42 am

Cece View the latest post

 


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: