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Postby bestadmom » Fri May 22, 2009 7:03 am

Hi all,

I backed into this site thru Marc's Wheelchair Kamikaze site and am glad I did.

I've had ms for 12 years, diagnosed in 4 days with double vision, my only symptom ever. I was on copaxone for 8 1/2 years before I started having rumblings of ms symptoms and when nothing made them remit, I was classified as sp and went downhill very quickly.

I am now in a power chair, and have been for a year, and on tysabri since September, which has been a godsend. I work as a magazine pubisher in NYC, alternating working at home and in the office. My NYC ms specialist is a leading researcher and great doctor, who brings warmth and compassion to the table, a quality that is hard to find.

This forum is great. I frequent another but as someone who was pre-med and very scientific and logical, I find this site more in line with my wants and needs.

As my search fo new treatments unfolds, I'm sure I'll be posting regularly. For now, I'm doing a lot of reading. I'm especially interested in Dr. Zamboni's research and Dr. Dake's treatment in Stanford.

Thanks for providing a forum that is open, informative and respectful.

Michelle
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Postby Loobie » Fri May 22, 2009 7:41 am

Welcome!

You are right about this site, and since I'm going to California to have the procedure done by Dr. Dake, I'm kind of pulling for that to work just a little bit. Once again welcome, you'll find many "experts" on here in all areas of disease management.

Lew
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Postby bestadmom » Fri May 22, 2009 7:47 am

When will you see Dr. Dake? I am hoping to see him Sept 3rd, on my way back from business trip to Las Vegas. Did you discuss insurance and payment with him? I don't know how my insurance will ever cover it, unless I have an "emergency" in Cali and land up in his care.
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Postby cheerleader » Fri May 22, 2009 9:00 am

Welcome, Michelle...
I'm glad you found Marc's site, and TIMS. I'm a Connecticut girl, too..now a westcoaster. We were able to have Jeff's insurance cover the testing as indicated by "headache and edema". The medical procedure was subsequently covered, since his jugular veins were seriously malformed. MS was never even mentioned. This is the way it will need to be, until there is enough research and data to show the connection. I hope you find some answers. I believe opthamologists will be on the front line of diagnosis, since optic nerve issues often correlate to the venous system. You, my husband, Lew, many others could have been helped so many years ago. I remain hopeful for healing and halting of progression.
all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bestadmom » Fri May 22, 2009 9:11 am

Hi Cheerleader,

Thanks for the welcome. It's your and your husband's posts in additions to Marie's that have really opened my eyes. How many days did Jeff wait after the stent implant to get on a plane?

I used to go to LA and SoCal 2x a year for a week at a clip on business and haven't done it in two years, since my mobility became an issue. Boy do I miss it. I think we will eventually move there for the great weather once our kids are out of the house.

Michelle
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Postby cheerleader » Fri May 22, 2009 9:20 am

bestadmom wrote: How many days did Jeff wait after the stent implant to get on a plane?
Michelle


Jeff stayed overnight at the hospital, was discharged the next morning and flew home...however, he's mobile (his issues are almost all cognitive/brain related.) Marie, who has mobility issues, took an extra day at the hotel before traveling back home by car. If you can take a few extra days to rest in Palo Alto, I'd recommend it. Not that flying would be unsafe, but you might still be sore. This is pretty major surgery, even for healthy folks.
We love California weather...would recommend it heartily!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Fri May 22, 2009 10:36 am

Hi bestadmom -

Welcome I am a PPMS'r who will be going to Stanford the first week of June...I made my reservations before Jeff's or Marie's feedback on post op. I am staying with a sister and be leaving the following day after op mid day. I am flying with my sig other so he should be able to nurse me if i need it :roll:
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Postby bestadmom » Fri May 22, 2009 10:40 am

Good luck peekaboo. I can't wait to hear about your experience.
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