Who are the BIG names in CCSVI ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby mshusband » Tue May 04, 2010 9:26 am

Whoa ... let's all calm down a minute. Take a deep breath ...

Everyone knows about Dr. Mehta in Albany. Heck, his information is on clinicaltrials.gov ...

It's the ones who are treating privately that we need to keep quiet. I'm doing the exact same thing ... withholding a bunch of doctors names I know of.

I agree with you 100% about not posting THOSE doctors names ... but Dr. Mehta has put himself out there and anyone in the world could find it ...

Just want to make sure this group isn't bashing someone for something without all the proper info.
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Postby gabbycats » Tue May 04, 2010 9:38 am

mshusband wrote:Whoa ... let's all calm down a minute. Take a deep breath ...

Everyone knows about Dr. Mehta in Albany. Heck, his information is on clinicaltrials.gov ...

It's the ones who are treating privately that we need to keep quiet. I'm doing the exact same thing ... withholding a bunch of doctors names I know of.

I agree with you 100% about not posting THOSE doctors names ... but Dr. Mehta has put himself out there and anyone in the world could find it ...

Just want to make sure this group isn't bashing someone for something without all the proper info.


we werent worried about the Mehta name.
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Postby mshusband » Tue May 04, 2010 9:39 am

That's all I wanted to clear up ...

No problem.

Thanks for a kind answer.
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Postby Cece » Tue May 04, 2010 12:41 pm

have pm's been sent to Jen and lifegirl (who quoted the names Jen said) to see if they could remove the names?

It does seem beneficial for the doctors to be under the radar in the beginning so that they can gain experience with this before attention gets too great on them and the hospital's admin or lawyers take interest and they get shuffled into the IRB process and, in the meantime, shut down. It seems to keep happening.
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Postby Trish317 » Tue May 04, 2010 1:29 pm

In Jen's defense, her post was almost two months ago. I completely understand the need and reason for privacy. But maybe it would be better to explain that to someone calmly.....and maybe in a private message.

I also understand the passionate feelings involved. But it will not serve anyone if people in the MS community who believe so strongly in CCSVI are fighting among themselves. It's pointless and completely counterproductive.
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Postby Cece » Tue May 04, 2010 1:52 pm

Trish317 wrote:In Jen's defense, her post was almost two months ago.

lol I didn't notice that!! So if the world did not end in the last two months, perhaps this one can slide? :) :oops:
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Postby Trish317 » Tue May 04, 2010 2:51 pm

Cece wrote:
Trish317 wrote:In Jen's defense, her post was almost two months ago.

lol I didn't notice that!! So if the world did not end in the last two months, perhaps this one can slide? :) :oops:


I understand everyone's concern. The stakes are getting higher. But the situation has changed greatly since Jen wrote her post at the beginning of March. It was, obviously, meant to help people.

Everyone who believes in CCSVI....the testing and the treatment....needs to continue to ban together. It's ok to be angry and frustrated. But it's not ok to turn on people who have the same horse in the race.

I turned 57-years-old in March, and one of the greatest lessons I've learned in all of my life is that love and forgiveness are the two most powerful forces on earth. They move mountains.

The man I love more than anything in the world was diagnosed with Primary Progressive MS in June 2007. Until now, he'd lost hope as his condition rapidly deteriorates.

I'll turn over heaven and earth, and pull stars out of the sky, for him to be tested and treated if he has CCSVI. I continue to look here and everywhere for help, guidance, and answers. I'm contacting doctors locally where we both live. I believe we should help each other but I also believe we need to advocate for ourselves.

All someone has to do is Google "interventional radiologists and the city they live in" to find a place to start. Contact them and if they aren't knowledgable, provide them with all the information that's been posted in so many places. But just give them the facts. That's all we need.

We're going to win this. I know it.

Also, for the record....Jen's last post was a month ago. Maybe she hasn't even been here reading updates.
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Postby WinnipegGirl_83 » Thu May 27, 2010 10:00 pm

Anyone have any information on Dr. Hubbard in San Diego?
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Postby Debranne » Fri Jul 09, 2010 1:30 pm

They are testing & doing a procedure for CCSVI at Clinic of the Heart, Cabo San Lucas, Mexico. Their pilot study was with 10 MS patients, under Dr. Rafael Moguel. Email = info@cardioabroad.com. I'm in AZ and am waiting to be tested here in the Phoenix aea. Good luck to all.
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Postby Cece » Tue Jul 13, 2010 10:32 am

MH, since your post count under your name is listed as only one, your other post would appear to be gone for good.
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Postby jimmylegs » Tue Jul 13, 2010 10:42 am

hi all FYI michael it is best to private message moderators with direct questions or comments.

to my recollection i did not see the original post. however, i can tell you that if it at all gave the appearance of being a sales pitch by someone with a vested interest in GME, that would be a rule-breaker.

try again, see what happens.
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CCSVI testing in Toronto

Postby Annbanan » Wed Jul 14, 2010 8:08 am

Toronto Medical Imaging Center is providing CCSVI doppler testing, they are affiliated with Port Perry Imaging. Ontario residents show their OHIP card and people from other provinces show their own. Not sure if it will be covered by my NS health card or not as I expect to receive a bill any day now from the NS Government! You need a requisition for your GP. Great service and I received a CD of doppler images. Results going to family doctor, waiting anxiously!
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Postby selkie » Wed Jul 21, 2010 5:21 pm

agree with Trish & MShusband - some of these "secret" clinics have public websites stating treatment for CCSVI.

United we'll get this treatment - divided we won't.
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Postby L » Sat Aug 14, 2010 6:14 pm

Dr Tariq Sinan (Kuwait + Egypt) is missing..
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Postby L » Sat Aug 14, 2010 6:16 pm

And Dr Roel Beelen in Brussels.
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