This Is MS Multiple Sclerosis Community: Knowledge & Support

I just 1 minute ago went to Dr Haacke's website and clicked the "be a volunteer" button. Yesterday it said "coming soon", but today there was a from to fill out to volunteer, SO I FILLED IT OUT. I wanted to let you all know even though I'm just a newbie here. I assume I'm volunteering just for an imaging study. I'm anxious for them to reply !!!!

Sorry, the website is ms-mri.com. The "be a volunteer" button is on the upper left corner.

Good information - BTW WELCOME "ozarkcanoer" This is interesting that Haacke got up and running as fast as he did. Hope he fills his volunteer quota fast -- we need the published data.

Sharon

Volunteer #2 signed up. Don't know what I volunteered for or where, but I'm game if I can help move it along!

Just added my name to the list.

Sharon - Don't you have stents? I thought he would be looking for people who haven't been treated. I know I am missing something, clue me in!

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

Dr Haacke is looking for iron deposits in MS brains. So someone who has had the stents would still have the old iron still inhabiting the brain (I assume). So I think Dr. Haacke is looking for stenosis PLUS iron deposits. Does this make any sense ?

OK, this is the kick in the old arse that I needed to get me to officially join this site! I'm a newbie and yet I've been lurking around the CCSVI forum for a long time

I also have volunteered on Dr. Haacke's site. It's quite a distance from me, but some things are important enough to make a priority. This is important.

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RRMS diagnosed 8/09; Copaxone 9/09; Copaxone + estriol study at University of Minnesota 10/09<br />

wow..this is so cool. Good find, Ozark! Looks like the good doc is signing up patients, doctors and researchers. Look at the list of "collaborators" to see where the CCSVI testing sites are located. So far only 2 in the states, in Michigan. One in Germany, a couple in western Canada, one in Toronto.
http://www.ms-mri.com/collaborators.php
Also a place to donate thru paypal -for non-MS folks like me:)
Dr. Haacke has been updating the site every few days, so maybe more sites will sign up. This is the power of the internet and grass roots...amazing.
cheer

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

I live in St Louis, so my hubby computed the drive to Detroit and Dr. Haacke would be just 9 hours (more if it's snowing in Michigan, LOL). So I'm just waiting for a reply !!!

BTW, I was dxed Jan 2008, RRMS, 40 some lesions, positive LP, double vision, insomnia, fatigue, depression. I'm one of those who has a high lesion low but low symptoms. Lots of symptoms in my head, none below my neck. I do Copaxone.

My first thought (and wish) is he's collecting data on where volunteers are located. Then when he gets his 10 or so people within, say, a 100 mile radius of a major university, like Yale or Harvard in my case, he can call them up and say, "Hey, Yale, I've got 10 people already lined up for you. Want to get on board?" Oh, I hope that's how it's going to work.

CRHInv

Yes, I have stents. If Haacke can use my brain to see iron deposits, I'm all for it. I am willing to spend the money to go to Michigan if he thinks I would fit his volunteer parameters. We shall see

Sharon

I live within 3 miles of one of the top medical school/biomedical research universities in the USA : Washington University in St. Louis. I wish I knew how to get them interested in this. My MS neuro is assistant professor of clinical neurology. I have an appointment with him in 3 weeks and will definitely talk to him about CCSVI. I'm a little nervous that he will just brush this whole thing off as a "flash in the pan".

Hi Ozarkcanoer,

Why don't you contact the interventonal neuro radiologists and the university to get the ball rolling.

As many on this forum have stated, if there is stenosis, it should be fixed. It doesn't need to be related to ms. Hopefully you'll get someone on-board to at least do the testing and become an outpost for Dr. Haacke.

There is less of a chance of the neurologists buying into this without the data they need to prove the theory.

I volunteered! Heck, Michigan is right up the road and I am already going to Buffalo in a couple of weeks. It is going to take studies to move this forward in the mainstream and the sooner the better!

I have also been forwarding this to my neuro's office where they have their own imaging center. I'd love it if they would bite.