This Is MS Multiple Sclerosis Knowledge & Support Community

Jaguar, is it possible to just call the hospital and ask to get tested? I assume they are using the known protocols for CCSVI. I go to Poland in April, but it might improve my comfort factor if I had confirmation of CCSVI beforehand.
...Ted

Fiddler
I got into the St Mary's study through my GP - she called Michael Baranyi (he's the technician) and they had just started the study so he said come right over. I actually went twice in a week so he could adjust his protocol. On Friday when I left, he had a long line of non-MS subjects going in for scans.

He found significant stenosis n my left jugular and major issues in my vertebral veins.

Now looking for some confirmatin via MRV.

C3Glo wrote:WOW!!!! This information is AMAZING for me ... I live so close & I will call on Monday & see what I find out! Thank you so much for passing on this info & your time! I will post any info I find out when I call ... I am looking forward to getting these scans done ASAP!!! Thank you again!

There is alot of information C3Glo on this Facebook Group (CCSVI with a BC focus).

<shortened url>

Hope this helps!

Thank you so much Chilcotin ... I actually just found this group yesterday & joined it! I have also been in communication with someone in that group who went last week to FCSC for the MRV.

Good morning C3Glo... I am new to this site so forgive me if I am not following proper chat etiquette. I see that you are in conversation with someone who has already had their scans performed at FCSC and as I am scheduled for this Thursday coming, I am wondering if you or anyone have any word on any results/experiences that you might be able to share?
Thanks much,
P

I just got called by false creek for a scam tomorrow and I backed out til I can hear from other people on if it worked

so I joined facebook and heard first hand reports about false creek. Other than a mild attenuation they saw no ccsvi. I might have saved money by stalling...

"Other than a mild attenuation they saw no ccsvi."

Billmeik:

So, if I'm understanding this right, False Creek has found NO CCSVI in MSers? Or did you mean something else?
...Ted

I PM'd a lady that had the MRV done at FCSC & she said she did not get the doppler ultrasound because she felt that they would not know what they were doing as. From my understanding, it is difficult to do & not many know what they are doing, so good choice on her part I think. She also felt they were competent with the MRV & she was glad that she had done the scan. She is trying to get stats from FCSC to see what kind of results they are getting. at this point I am holding off till they do some more. Eventually I would like to get an MRV done, but after they have done enough to ensure I will get the best possible result ... regardless of what that the outcome may be.

just on the one mser on facebook.

dunno about others. They said they'd done 20.

Hello Jaquar,

wow, this is good news! I haven't heard about this before. Could you please post information regarding who to contact regarding taking part in this study? I live in Toronto, so it's not too far to travel.

Thank you so much.

Julia

Jewelia et al,
I received this e-mail this morning:

Good morning

Please see below for an additional inquiry from MS patient regarding possible involvement with study in the new year.
Again, I am not aware of this study - would you kindly direct him to the appropriate contact?
I noticed that this study has been discussed on a online forum (http://www.thisisms.com/ftopicp-80689.html) - I believe this may be why we are getting all these inquiries.

Thanks,

--
Manon de Raad
Project Coordinator
Department of Clinical Epidemiology & Community Studies
St. Mary's Hospital Center
Tel.: (514) 345-3511 Ext 3074

Obviously, they have been deluged... lotta folks must be reading this thread. If/when I get a reply from someone there who knows what is going on, I'll post it.

Jewelia,

I read your post on the scans being done in Gatineau, Qc in the begining of 2010. Do you have more info? Where did you learn this? Thanks very much.

It's funny.. reading this forum and then realizing that people are talking about me!

I'm not sure I can provide any more information than what has been passed on here. I have still not had any response back from the Vancouver clinic as to their success rate with finding CCSVI. I have NOT heard back from my neurologist after sending my MRV results to him 5 days ago. My results stated that I had some attenuation of the left jugular vein at the C1 level, but until I can get that clarified, I don't really want to assume what that means. They did say however, that I did not have any notable stenosis. But, what is their criteria for diagnosing stenosis? Is it a strict criteria? I wonder if there is something there in my scan, but if it is below a certain percentage, maybe it won't be considered stenosis? Lots of questions.

I have a reporter coming in the morning to interview me (gulp!) so I pray that I can speak for many in how MS affects our lives, and what this research means to us.. and that it cannot come soon enough!

Humbly,
Dawna

Thanks Dawna for getting this message out there for all of us! It's awesome!!!! If you finally do get any info from FCSC I'd love to hear about it!