This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,

My 6 month visit is imminent and I am wondering if anyone out there has had any luck discussing CCSVI at this location. If so, which doctor? I have a copy of my MRV and wonder if it's worth bringing along? Not sure who I'll be seeing this time.. they've called to change my appt twice already.

Thanks

I just got a smile, and a figurative pat on the head from Oger. I was also prescribed Valium to treat my vertigo/balance problems, with the caveat that "it may exacerbate (my) fatigue..." I have not even considered filling that prescription.

For what it is worth, I have little faith in UBC MS Clinic, and my thought that they will not even go ahead with the research has been vaguely reinforced by a "connection".

I think that at this time next year, interventions for CCSVI will be a matter of course, internationally.

Su milagro puede estar varioso.

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My name is not really Johnson. MSed up since 1993

Thanks Johnson.. when you say "not even go ahead with the research" do you mean.. the research planned for the radiology dept? awaiting fund approval from NMSS?
This would be an unfortunate turn of events.. and what then would they do with the funds raised to date... those contributed specifically for CCSVI.. you'd think they would have some legal obligations.. at the very least to refund...
I sure hope this is not the case..

PC and Johnson,

I go to Dr Traboulsee, who is a leader in MRI technology, so if anybody can read your scans, it's him. Until CCSVI, though, reading scans was just about pointing to lesions, at least for me

I phoned UBC Friday for an update, but missed catching someone there. The last I heard is they are definitiely proceeding. Dr. Simka was there last week to speak to the researchers.

This research isn't moving fast enough for anyone, but it is moving. We shouldn't confuse university research with the public health care system. If UBC takes its time to get things underway so they are sure they get it right, that's OK by me. Only 100-200 participants will be involved in the multi-year testing and treatment anyway. The rest of us have to work on the local, provincial, and federal systems to get public funding for testing and treatment. We can't put everything on hold until UBC finishes.

Someone on the Facebook page was there recently and said their neuro reported they were still raising funds to upgrade equipment. I think they want to measure remylination, very accurately, so they can tell if treating CCSVI affects the nerves in the brain. This will silence any naysayers who think the effects are all placebo.

Cheers,

~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 />

Is this a twin study or do you know if they're planning a full-fledged diagnosis of CCSVI and treatment study requiring regular MS patients?

The last I heard is it was a two-step study -- Phase 1 to confirm CCSVI in MS and controls; Phase 2 to treat newly diagnosed and monitor them logitudinally. Twin studies would be appropriate for Phase 2 if that's the demographic they choose (although pretty tight -- newly diagnosed people who have a twin), but we all know there are a LOT of people with MS out there. My bet is the twin study, if they are doing it, is something additional. The title of the research under ethical review says nothing about twins.

btw, I think a twin study would be fantastic b/c it would eliminate many of the extraneous variables. I just don't know if the sample is accessible given how few they would have to choose from.

~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 />

thanks very much for the info, Sandra!