This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all
Any chance somebody on the forum managed to get a ticket for the below.

REGISTRATION IS NOW FULL
Information session
Chronic Cerebrospinal Venous Insufficiency
(CCSVI) & MS
*THIS SESSION IS NOW FULL

Featuring: Dr. Luanne Metz
Director MS Clinic, Foothills Medical Centre,
Co-Director of the MS Program at the Hotchkiss Brain Institute

WHEN: Saturday February 6, 2010

WHERE: Coast Plaza Hotel & Conference Centre, 1316-33rd Street NE

TIME: 10:00 a.m. – noon; doors open at 9:00 a.m.


No walk-ins please. There will be a Q&A session. Only questions submitted in writing at the event will be addressed – time permitting.

REGISTRATION IS NOW FULL


© Multiple Sclerosis Society of Canada

Hi beerduff

No i did not get a ticket i did not even hear about this,I'm still waiting to see my Neurologist at the Foothills Clinic.
Would have liked to have known,did you get a ticket?
This is good news,i hope what do you think?


Pam

No i did not get a ticket i did not even hear about this,I'm still waiting to see my Neurologist at the Foothills Clinic.
Would have liked to have known,did you get a ticket?
This is good news,i hope what do you think?

I don't want to pee on anyone's parade, but this is what some people thought about the forum in Winnipeg.

If this is a "Multiple Sclerosis Society of Canada" information evening - particularly one where "Only questions submitted in writing at the event will be addressed – time permitting," I’d have to say this is probably another exercise in message control. I would be happy to be wrong. I would be happy if

-you are not told that no one should even pursue diagnosis

-they have bothered to think about the numbers in Zamboni's study (the important one, that is: number of patients whose veins remained open who suffered a relapse: 0)

-they don't attempt to scare you

-if you don't hear that even if CCSVI does amount to something you shouldn't expect access to treatment for, oh, four years.

But I wouldn't count on it...

-d

Hi everyone,

If you want to get Dr. Luanne Metz, Director MS Clinic, Foothills Medical Centre's slant on Dr. Zamboni & CCSVI take a good hard look at this write up. Like dunkempt said, "I don't want to pee on anyone's parade." But......the article in the link below should give you a good idea of how the meeting will go.

http://www.canada.com/health/story.html?id=2475272

Lora

Oh yeah, I forgot about this part of that article from the Post:

"You'd lose your licence" as a Canadian physician for treating a close family member under anything but emergency conditions, Dr. Marrie said.

See, they might be fuzzy on Occam's razor at the MS Clinic in Winnipeg, but they're sharp on using ad hominem attacks.

[Now, I KNOW of course that Dr Zamboni did not in fact operate on his wife. But you'd think someone (either Dr Marrie or the National Post) could have checked on this before issuing something that libelous.]

See, that's why I hope CCSVI turns out be true. Well, there's the whole stopping-progression-of-MS part, that would be cool. But also I could get a different set of doctors.

-d

Hi

This is so sad, i got excited for nothing?
So i should keep my appointment with Dr.Simka :lol just kidding I'm still going no matter what,i was just hoping things were going to start here,that would be nice.

Thanks for the info

Pam

I don't understand why many neurologists are speaking so negatively about CCSVI so early in the game. Prominent research universities are doing clinical trials and studies right now on CCSVI. Why disparage research that isn't complete yet ?

My neurologist, I think, is taking the right approach and waiting to see how these studies pan out before he makes a final judgement. I really have to respect him for that.

ozarkcanoer

pgm1 wrote:Hi beerduff

No i did not get a ticket i did not even hear about this,I'm still waiting to see my Neurologist at the Foothills Clinic.
Would have liked to have known,did you get a ticket?
This is good news,i hope what do you think?


Pam

Hi pgm1
Hope all is well.
Like you i never managed to get a ticket.
As far as i can tell the tickets were snapped up very fast, this could be a good thing.
It would be nice to be a fly on the wall though, just to see what there views are at this time.
Other than that there does not seem to be much movement in Alberta.
I have been waiting on the UBC study, i read that they are only testing 100 people.
Quick quote
Unlike Dr. Zamboni's earlier studies, the UBC research plan will include a control group – which gives more heft to a study's findings – and will take place over a longer period.

In Dr. Taboulsee's proposed trial, researchers would closely examine participants' neck and stomach veins. The study group will include people with and without MS. Each participant will undergo three tests, including an ultrasound, a magnetic resonance imaging test and the insertion of a catheter. In that test, dye is injected to give researchers a closer look at the veins.

Only MS participants with blocked or narrowed veins will move on to the second stage of the trials.

Half that group will undergo a vein dilation procedure – similar to an angioplasty – to expand the vein, the other half won't.



This is really exciting, i did not know they were going to open the veins.

I really hope we can get on this study.

It is going to be a lottery win to get in.

Two things about this article:

1. I'm sick and tired of hearing the same old story about some "crazy" MS patient thinking of selling his house for the $80,000 operation, having the operation wind up a bust, and ending up on the street homeless. Do they think we have no brains??

2. It sounds like one big giant whine session -- we are just so annoyed by all of these "crazy" MS patients calling us and asking for answers and help. They need to leave us alone!

Basically, this article describes MS patients as a bunch of histrionic mentally unstable and emotionally labile people.

Jeez...you would think they don't care about the emotional and physical health of their own patients. Where is the empathy? I wonder if they sometimes forget what a difficult disease MS is to live with and that not surprisingly people are looking for hope. Or maybe patients just want questions answered.

Notice how anti CCSVI article is sprinkled with CCSVI info just to look neutral. One day I would like to get answers from people sitting in responsible position and yet they either ignored or opposed CCSVI theory

Calgary - isn't that where Ashton Embry lives? I wonder if he'll be there!

Ashton Embry will not be able to make it to the MSSOC-sponsored CCSVI meeting but other DIRECT-MS executive members will attend. I hope Dr Metz takes a positive and factual approach and does not complain about too many phone calls. I find the written-only questions approach, which is her standard MO, to be not in the best interests of the attendees. However Dr Metz's scientific knowledge is rather rudimentary and she uses the written-only strategy to allow her to cherry pick questions she feels comfortable with.

The good news is that Direct-MS will be hosting a CCSVI information meeting in Calgary on April 30th. The presenters will be Dr Bianca Weinstock-Guttman and Dr Robert Zivadinov of the University of Buffalo. They will present an overview of CCSVI as well as some prelimanry results of their current research on CCSVI. Notably they will answer questions from the floor for up to an hour.

Hi all

I managed to get a ticket for this meeting. I found out about it because I volunteer for the ms society in Calgary and therefore they send out an e-mail for anyone on the society's e-mail list.


(fyi- rrms- dx 2003)

if anyone wants to contact me regarding this-- please do

thanks
Andie

Andie - please come back here and fill us in. I'm seeing Dr Simka on Tues but it would be good to hear from you how it all went.


Claire

Hi Claire

I can't seem to send you personal messages?


anyway- I am here and excited to chat with you

you can e-mail me at

andrea.milner@cbsa-asfc.gc.ca

thx