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Posted: Sun Apr 18, 2010 7:08 am
by bossman
Do you mind sharing with us where exactly you had your liberation, it would be greatly appreciated.
Thank-you!! GOD BLESS!!
Posted: Sun Apr 18, 2010 8:16 am
by mshusband
Do you think sharing it on the internet is the best bet anymore? Anytime you get the word out ... the doctor gets shut down.
Don't you think private messages for people interested IN THE AREA is the best bet anymore? Keep it quiet.
It's possible drug reps and people who would want to shut these things down are trolling this website looking at this and information just to go negative against it and the doctors?
TRY PM's PLEASE as a way to spread "sensitive" information ...
(at least that's my opinion).
Posted: Sun Apr 18, 2010 8:35 am
by tzootsi
mshusband wrote:Do you think sharing it on the internet is the best bet anymore? Anytime you get the word out ... the doctor gets shut down.
Don't you think private messages for people interested IN THE AREA is the best bet anymore? Keep it quiet.
It's possible drug reps and people who would want to shut these things down are trolling this website looking at this and information just to go negative against it and the doctors?
TRY PM's PLEASE as a way to spread "sensitive" information ...
(at least that's my opinion).
I agree. Even though our doctor was ok with us telling other folks, I think doing PM's might be the way to go about it.
Posted: Sun Apr 18, 2010 8:51 am
by bossman
Could you please send me a private message then? Thank-you!
Re: April 9th in New England!
Posted: Sun Apr 18, 2010 10:29 am
by ven
tzootsi wrote:My wife Melanie, is scheduled for a venography this coming Friday, April 9 at a major New England medical center. Melanie was dx’d with a mild case of MS in August of 2007. Her symptoms include a heavy right leg, balance issues, burning skin, etc. Thanks to this forum (thank you Cheerleader!), we took it upon ourselves to call the interventional radiologist at our local medical center this past November. He had never heard of CCSVI, but was interested as soon as I explained what it was. A few weeks later, he had my wife come in for a Doppler. He found some turbulence in the left jugular, and felt it was sufficient evidence to proceed with the venography (he felt an MRV wasn’t necessary). Luckily, he is friends with both Dr. Dake and Dr. Sclafani and is now in contact with them.
I’m not at liberty to disclose the doctor at this point, but hopefully will do so in the future. Tomorrow 4/6, we meet with him to go over the procedure, and Friday is the big day! We will keep you posted.
good luck
doctor
Posted: Sun Apr 18, 2010 2:05 pm
by Selmahope
Ditto for me- I am not interested in procedure yet-only intersted in having the doppler to eliminate all variables. I don't have an MS diagnosis (no lesions)but do have a zillion MS symptoms/home bound in bad shape/declining past 4 years since onset of optic neuritis. Would like to have the doppler done just to see if I have any kind of blockages.
Can you PM me at
f13girl@comcast.net.
Thank you!
Posted: Mon Apr 19, 2010 5:31 am
by tzootsi
bossman wrote:Do you mind sharing with us where exactly you had your liberation, it would be greatly appreciated.
Thank-you!! GOD BLESS!!
I sent you a PM.
Posted: Mon Apr 19, 2010 9:32 am
by ILoveHim
I hope your wife continues to have improvements in her MS symptoms!!
I am outside of Boston, as is my friend that has MS. I would love to know more if you're willing to PM me.
Thank you!
Posted: Fri May 14, 2010 6:31 am
by tzootsi
Well, Melanie just had her one month followup with her IR. He did a doppler on both jugulars, and found them both flowing well - whew! He had her on Plavix for a month, and is now on baby aspirin. He feels this will help prevent re-stenosis.
As for her improvements - less l'hermettes, less spasticity, more energy, heavy right leg is sometimes less heavy, balance is sometimes better.
Her general outlook is better, and she would do the procedure again in a heartbeat if she had to.
Posted: Fri May 14, 2010 9:28 am
by ILoveHim
I am so glad to hear that she is doing well!
Posted: Fri May 14, 2010 1:35 pm
by magoo
What a wonderful story and outcome!!!!
I had pain when they opened my veins too.