This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello all. I've just been wondering about any Canadians and if they are finding doctors, researchers or radiologists that you have approached and have expressed interest in CCSVI. Are they welcoming any information to be brought to them. Are they receptive of the idea. Especially radiologists, have you found any that are wanting to find the proper protocols for testiing and are working on it.
I'm in the process of contacting researchers, doctors and radiologists from the University of Manitoba and St Boniface Health Research Centre.
I'm pleased with the initial response I got from a couple of doctors there and they said they would forward my information on to the relevent departments. They aren't directly involved with current research obviously but know of what's going in UBC and other centres and are watching closely. I haven't talkd to anyone involved with radiology yet so we'll see where that goes. I've got some others I wish to contact as well.
Has anyone had any positive responses?

I haven't tried - as of yet.

Keep us posted, mechanicallyinclined...I'm in Winnipeg as well.

I have a few "pokers in the fire" in the Lower Mainland and Vancouver Island, but can't report any success yet. One is a GP (elderly) with a very open mind, another MD outside the mainstream, and a radiologist, who is very intrigued, but doesn't image vascular systems. He has dropped a few lines to colleagues, with mostly dubious response. All are willing to refer.

So far, this is through an arm's length advocate, but I sense a good potential. After my experience with my (now fired) GP, I am being careful not to booby-trap anything. I am being methodical (which is an euphemism for fighting through the cognitive problems that plague me)

Of course, these holidays slow things down too.

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My name is not really Johnson. MSed up since 1993

I'm a little outside Halifax, NS. I have a very open minded GP as well. Who actually brought CCSVI up to me on the last visit. In the new year i'll see if she will refer me. I don't expect she will be the problem though. I'm expecting radiologists to be the issue. Maybe some careful wording on the referal might do it.

I have been having alot of circulation issues. Purple feet and hands, almost black out almost everytime i bend down and get up quickly. Alot of pains in my neck. Not just stiffness, something else, when I rub the area I become very dizzy. Maybe if we put those forward and not the MS issue we'll have some better luck.

I can see them now... Oh he's getting the pains in his heck because he thinks he has the problems with his veins.

My GP is also very open-minded. I guess when they specialize they take the close your mind 101 course.

Unless your GP is very aggressive I don't think he'll do much for you. Neurologists , well I think more of them still only buy the autoimmune theory. Asside from that I wrote the minister of health and was basically told that untill research is on a wider scale and treatments are proven, the medical community has to act on what has been working. I'm trying to contact doctors , radiologists tied in with universities or researech hospitals to see if they are taking notice of CCSVI. Hopefully I'll find someone that is willing to act on it. You have to arm yourself with the information that will open their eyes and say "hey maybe there's something to this"

Point of interest. Keep an eye on the CBS news forum here. Apparently cheerleader was interviewed by CBS and that should be aired in the near future.

Keep knocking on doors for sure . Someone must know someone that will take this by the horns and run with it.

I haven't tried but I don't know how to. Mechanicallyinclined, if you want to share how you went about doing this, I'd be interested in reading about it and if my limited energy etc. allow me to, I'd definitely look into it. I'm in Waterloo, Ontario.
My GP wrote up a referral for me and I went over the border to Buffalo for an MRV. Results came back 'normal'. I'm NOT convinced of that so I'm trying to get 2nd and 3rd opinions on that.
It's an ongoing process!!

annad
Where did you gettested in buffalo. Was it a clinic that was propeerly trained to do the test would be my question. Not to be nosy but just wondering what it cost you to have the test done? Just curious. I haven't seriously looked at doing that.
I just basically googled or searched universitys or research hospitals and searched through thier websights for names and contacts in the medical research field , especailly radiology asnd vascular researchers and/or doctors. If you wish, PM (private message) me with your email address and I'll send you a copy of what I sent them. I'm no doctor but I think I have my ducks in a row.

Annad,
Have you looked at the topic threads of false negatives? The people at Buffalo should know what they are doing... Check the threads- just search the site for "false Negatives".

Thanks tispy. . .
I'll search.
Happy New Year!

My Canadian doctor (in Victoria) has offered to make any referral necessary. I held off doing the scan at False Creek Surgical because a) I was worried they may not be fully up to speed (turns out they weren't, but they are re-doing the early scans), and b) UBC announced its study and I gave my scan money to them instead.

I am still willing to pay for a scan if UBC gets underway (and I'm not one of the 100!) and False Creek is getting good results, but I obviously would prefer the public system to start training technicians and doing scans. That probably won't happen until UBC reports at least Phase I results (optimistically -- July 2010), so I'm in a bit of a holding pattern.

BTW, this doctor is NOT my regular GP, but an acupuncturist who also is a retired GP. My regular guy just poo-poo'ed the whole idea of CCSVI, saying something like "if it was that easy, don't you think we would have solved MS by now?" I'm working on him...

Happy new year everyone!

~ Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

Annad,
Hope you can find some useful information- sounds like false negatives are common in these early days.

Happy New Year to you too and to the people on this site- the ones quietly reading and those posting! Thanks and best wishes to all.

Ditto Tipsy. . (hope you don't mind I've shortened your name!)

I'm usually the quiet one reading but once in a while, I get out there.

We will all have a better new year!
yay!