This Is MS Multiple Sclerosis Community: Knowledge & Support

lol...bed and breakfast hmmmmmm....don't give me any idea's!!!

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

hello leetz,
just a quick question, any major relief or negatives with campath?

I just received an e-mail from Megan (Tue. March 9th 10:30am)... It wasn't personalized, so maybe others have received the same one??

I guess they really have not started yet as was reported earlier??

Just received this email from Albany:

"Dear Madam/Sir,

Thank you for your request to be seen by our office for evaluation of CCSVI. We are writing to inform you that we are currently waiting for Institutional Review Board approval to begin our “Liberation Study” with The Vascular Group PLLC. Once we obtain that approval, we plan to move forward with scheduling patients. At this time we are unable to provide you with any additional information.

We understand that many patients are traveling from long distances, and we will do our best to make arrangements so as to accommodate your travel requirements.

When our approval is in place, we will provide additional information. We look forward to having you as a patient, and are dedicated to raising awareness and understanding about Chronic Cerebrospinal Venous Insufficiency, or CCSVI. Please feel free to contact our office any time with questions or concerns."

Looks like they're still trying to work out the kinks... Ugh!!

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Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

I also received that email today. When Megan called last week, I specifically asked her if everything was approved and ready to go. She said all approvals were done. So I must say that this email is confusing to me.

kc

I also received the same email today. I'm hopeful that this is a step in the right direction.

Jozee

I also received the same email from Dr Matha's Office - lets hope they will be booking appointments soon!

I also received the same e-mail today and was very encouraged.I responded back and suggest the same to anyone who received it as I think that they might be refining and updating the list to make sure it is current and when your name comes up that you are still ready to move forward.
GOD BLESS

I also received the same email this morning (just picked it up a few minutes ago). I am certain it is a form email for those of us that filled out the request for this trial. Does anyone know anything about this group outside of the CCSVI trial? I worry because thier web site is not very official looking, not that it needs to be I suppose but it makes me uneasy.

UPDATE: I'm sorry, not trying to be negative. I am so happy that they contacted me back and though it looks like there are a couple hangups this trial may start soon!! I have seen so many positive posts about this practice on this site after looking through the other treads. Maybe I should call and volunteer to give the site a facelift to make sure there are not any other people that have the same thought

I will tell you, having had the fortune of being there, it is a very extremely professional group with wonderful, warm and caring staff. Dr. Mehta has an amazing name out in the community and after having dealt with him, can understand why. He's professional, confident and easy to talk to. He actually listens and cares. They have an excellent reputation. This is why I called them. I was never more encouraged than when I left that office....
Kacey

I live near Albany Medical Center and will say it's one of the top medical colleges/hospitals in the capital of NY. I haven't visited their website but know the hospital/vascular group is very good. I met with the vascular group last month. The hospital just received a $10 million grant for research too, which is pretty awesome.

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Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

I received the same email as well.

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"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

Has anyone received information regarding cost and insurance?

Megan did tell me that this study is not sponsored so they will need all my insurance info. I do not know about the actual costs.

kc

I got the same e-mail too and seems to me things have gone good enough and they have come far enough to send out this mail to us and they are waiting for final approvals. This is my understanding.
I also got an e-mail from Dr. Sclafani...or his staff/ nurse Holly.
I really want to go to Dr. Mehta though. Holly sent me a form to fill out that included some personal info. like SS#. That was a little weird. !!!!!!!!!