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Posted: Wed Feb 03, 2010 3:50 pm
by ozarkcanoer
MS_mama,

My scan was cancelled by Dr Haacke too. I just think Dr Haacke is overwhelmed and doesn't have enough $$$. I hope that Dr Mehta can set up a study in Albany !! The more varied studies to confirm or refute CCSVI the better. If the Buffalo results are positive then the naysayers will say that the study was contaminated by the close relationship between Dr Zamboni and Dr Zivadinov. Let's give a big hooray for Dr Mehta !! I googled him and I am impressed by his credentials !!!!!

ozarkcanoer

Posted: Thu Feb 04, 2010 6:35 am
by jr5646
>KACEY

Could you please post your husband's info to the "Tracking" sticky ...

http://www.thisisms.com/ftopict-8346.html

When I'm down, I read them... it really helps....


Thanks,
John

Posted: Thu Feb 04, 2010 8:40 am
by mrsilkykat
The correct address is

wilcoxm@albanyvascular.com. (don't forget the m)

I just got off the phone (2/4 8:30 PST) & was given the same info as previous posts: readying protocols this month, leave info at email.

Posted: Thu Feb 04, 2010 8:51 am
by annad
Thanks for the correction!!!
:)

Posted: Fri Feb 05, 2010 4:00 pm
by Jen570
Cece wrote:
kc wrote: I called this morning and have left my contact info with his secretary, Megan.
Megan is Dr.Mehta's nurse not his secretary. :D She also happens to be my neighbor and close friend. I was diagnosed two years ago. I have been talking to Meg about CCSVI as soon as I heard Dr. M treated someone. She understands how important this is to us and is keeping me informed on how the study is being set up. Meg is an awesome nurse and is collecting ads much info on CCSVI and MS as she can. Jen :)

Posted: Fri Feb 05, 2010 4:41 pm
by jr5646
Jen570 wrote:
Cece wrote:
kc wrote: I called this morning and have left my contact info with his secretary, Megan.
Megan is Dr.Mehta's nurse not his secretary. :D She also happens to be my neighbor and close friend. I was diagnosed two years ago. I have been talking to Meg about CCSVI as soon as I heard Dr. M treated someone. She understands how important this is to us and is keeping me informed on how the study is being set up. Meg is an awesome nurse and is collecting ads much info on CCSVI and MS as she can. Jen :)
What a small small world we live in, huh? That is awesome (not awsome that you have MS )... and what are the chances??? Do you plan on seeing Dr. Mehta and testing/treating ccsvi?? Thanks for posting Jen.. please keep us updated if you can... or if it is ok with Megan and the Dr.?

Give this to Megan .. I doubt Buffalo will share their testing protocols since they will begin charging for testing soon, but you never know.

http://www.bnac.net/wp-content/uploads/ ... 4-2010.pdf

We've exchanged only a few e-mails and she seems really nice.. I'm on yet another "list".. hopefully this one will pan out !!! Who knows, maybe you can help us out with some "Albany" insight - like maybe where to stay, eat ect. during our "hopefully" soon visit..

-John

Posted: Fri Feb 05, 2010 4:44 pm
by Cece
Jen570 wrote:Meg is an awesome nurse and is collecting ads much info on CCSVI and MS as she can. Jen :)
My mistake! She sounds like a wonderful person to be involved in all this.

I told a friend today about my being on the list for Mehta's study and she started crying! Happy tears.

I hope this happens. :)

Posted: Fri Feb 05, 2010 5:52 pm
by Jen570
No worries! I talked to Meg after I posted and told her I stuck up for her title. LOL! I know as a fellow nurse, you want those hard earned letters after your name :D
Dr.Mehta is a wonderful doctor and person. His office is fabulous to deal with. My father participated in a AAA study through Dr. Mehta's office and did wonderfully.
I have known Megan forever. I could throw a rock out my window and hit her house. LOL! She is keeping me up to date and I will pass on what I can.
I will help anyone who is coming into the area find a nice hotel. I live about ten miles outside Albany. It is a beautiful area, I have lived here all my life. Hotels are very affordable. Hugs, Jen

Posted: Fri Feb 05, 2010 6:17 pm
by jilthepil
Jen - what a crazy coincidence about Meg being your neighbor. One of the secretary's in Dr. Mehta's office has a son with MS. (I won't mention names). BUT - I told her to cheer him on. LOL.

You can also tell Meg that my website msliberationusa.com has a downloadable PDF that is 85 pages long and is full of information on the topic. It is like the one stop shop for CCSVI.

I actually am the one who put Dr. Mehta in touch with Dr. Haacke. I believe he is attending the workshop on the 7th.

Posted: Fri Feb 05, 2010 6:28 pm
by Kacey
How awesome is all of this, guys? When I called to make Michael's appointment, I spoke with a nurse (must have been Meg) who was really interested in the article I was speaking about. She told me she had a friend who had MS. I faxed it to her right away. Jen, I must have been speaking to Meg, and she must have been talking about you.
A small world indeed!!

Posted: Fri Feb 05, 2010 6:36 pm
by jilthepil
That is a twilight zone moment!!

Posted: Fri Feb 05, 2010 6:54 pm
by jr5646
Thanks soooo much Jen.... and welcome to TiMS - I have a close friend and sister in law who are nurses - sadly, sometimes a thankless job. I gave up asking my Neuro. questions awhile ago and rely on the ms nurses to 1) always get back to me 2) give me straight answers and 3) genuinely care..


Anyway, glad to hear folks think so highly of Dr. Mehta... It would be a refreshing change to see some genuine compassion from a doc... as my experiences have not been very good lately...

It still amazes me how we all have access to instantanous information via the web... the world is really shrinking...

Thanks for your help... this must have all just been "meant to be"... unbelievable!!!!!

@ Kacey - awesome is an understatement :-)

Posted: Sat Feb 06, 2010 12:35 am
by zinamaria
First, thanks to Kacey for all that you have given us in the way of info on Dr Mehta! Cleary the treatment is making a huge difference in yours and your husband's quality of life, this is so incredible, to actually hear about it from someone's personal experience....gives us all so much hope!

Also Jen, I tried to email you personally but found no way to do that, I would like to ask you some questions about Albany, but think it is more appropriate to do so on a private email. My email is in my profile if you wouldn't mind an exchange? Thanx,

zina

Posted: Sun Feb 07, 2010 9:30 am
by Cece
I looked into hotel options, with the goal of being near Dr. Mehta's address and not having to rent a car, and came up with the Hilton Garden Inn University Medical Center. It's connected by skyway to the hospital and has a shuttle to the Albany International Airport.

Jen, are you at all familiar with this hotel, would you recommend it?

I am also wondering about more logistics...will Dr. Mehta's team be able to bill this to insurance? Will the study have inclusion/exclusion critera, so that being on the list might not mean getting in? Is it still a reasonably sized list? It's okay if you can't answer these!!

I like what I've read here about Dr. Mehta as a doctor and that he's learned from Dr. Dake directly. I know others have said it but I agree: Kacey, you led the way, you helped not just your husband but the rest of us too, you are an angel. And Jen, what a crazy coincidence that you turn up here, we are fortunate to have you here. :)

Posted: Sun Feb 07, 2010 3:27 pm
by Jen570
Hi! I have been on this board for a while but never post and when I wanted to I forgot my login. :roll: Damn MS! So I had to re-register. The Hilton is very nice. Not far from the airport. I asked about inclusion and was told the only inclusion is a definitive MS diagnoses. I didn't ask Meg how many were on the list and how many were being allowed in the study. I'll have to ask. And I'll ask her about the billing stuff. Jen :D