Who are the BIG names in CCSVI ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
mshusband
Family Elder
Posts: 249
Joined: Sun Jan 24, 2010 3:00 pm
Location: Pittsburgh, PA, USA
Contact:

Post by mshusband »

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.
User avatar
gabbycats
Getting to Know You...
Posts: 15
Joined: Sat Dec 26, 2009 3:00 pm
Location: MA
Contact:

Post by gabbycats »

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.
User avatar
mshusband
Family Elder
Posts: 249
Joined: Sun Jan 24, 2010 3:00 pm
Location: Pittsburgh, PA, USA
Contact:

Post by mshusband »

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

No problem.

Thanks for a kind answer.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

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.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
User avatar
Trish317
Family Elder
Posts: 357
Joined: Sat Sep 06, 2008 2:00 pm
Location: Rhode Island

Post by Trish317 »

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.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

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:
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
User avatar
Trish317
Family Elder
Posts: 357
Joined: Sat Sep 06, 2008 2:00 pm
Location: Rhode Island

Post by Trish317 »

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.
User avatar
WinnipegGirl_83
Family Member
Posts: 45
Joined: Wed May 19, 2010 2:00 pm

Post by WinnipegGirl_83 »

Anyone have any information on Dr. Hubbard in San Diego?
User avatar
Debranne
Newbie
Posts: 1
Joined: Tue Apr 21, 2009 2:00 pm

Post by Debranne »

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.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

MH, since your post count under your name is listed as only one, your other post would appear to be gone for good.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Post by jimmylegs »

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.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
User avatar
Annbanan
Getting to Know You...
Posts: 19
Joined: Mon Jul 12, 2010 2:00 pm
Contact:

CCSVI testing in Toronto

Post by Annbanan »

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!
User avatar
selkie
Family Elder
Posts: 222
Joined: Sat Nov 21, 2009 3:00 pm
Contact:

Post by selkie »

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.
User avatar
L
Family Elder
Posts: 946
Joined: Sat Oct 20, 2007 2:00 pm
Location: The United Kingdom
Contact:

Post by L »

Dr Tariq Sinan (Kuwait + Egypt) is missing..
User avatar
L
Family Elder
Posts: 946
Joined: Sat Oct 20, 2007 2:00 pm
Location: The United Kingdom
Contact:

Post by L »

And Dr Roel Beelen in Brussels.
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”