Waiting To Hear

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Islandgirl » Sun Jul 05, 2009 12:00 am

Hi Daisy, Thanks for your post, you made my day! I go to Stanford the 6th of July and it was great to hear about your improvements. Islandgirl
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Postby peekaboo » Sun Jul 05, 2009 6:17 am

Hello and Welcome Daisy -

I am just as curious as Marie, as I suspect others here are too. Wow 4 stents...Thanks for sharing.

Besides the questions above from marie, how did you know to contact Dr. D? Was it this forum? I just wonder how many others that we do not know about that are being treated. This is great news.
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Postby javaneen » Sun Jul 05, 2009 7:02 am

Welcome Daisy! Thank you so much for posting your info and I am just as curious as the rest of us about all the other details. Please share if you feel comfortable. I am so curious how you found Dr. Dake...I wonder how many other people have found him in different ways. What an amazing guy!

Enjoy thisisms forum. It is the most fantastic place for people with MS as it is full of extremely intelligent, kind, supportive people who after a very short time of knowing them I can consider friends.

I look forward to hearing more about your experience. Thanks!
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Postby Daisyduck » Sun Jul 05, 2009 9:39 am

To Marie:
Hi, Marie: As I said I've had this thing for around 30 years. I had an almost "violent" onset, but a year or two after becoming symptomatic I went to Florida, Cocoa Beach, to be treated with snake venom and became asymptomatic for probably 15 years after that, continuing with home injections. But the FDA interfered with Miami Sepentarium's providing venom for this purpose, and the medicine went south to Mexico where it disappeared eventually around the time of live cells and eventually stem cells.
I am still on my feet and use a cane to ambulate, but Dr. Dake strongly advised me to somehow get a "trainer" (can't afford) so I can get off the cane as using one help wekens your body. Instead I am exercising on my stationary bike as many 5-minutes sessions a day as I can handle and have time and inclination for. I also have a balloon tied together (without air) and slip it around my ankles and pull one foot out, turn the ankle, to the side and back, and then the other. I think I was not looking for a miracle but wanted to see if the disease process could be stopped or at least slowed, and I am greatful for the results. I think I had RR MS, but by now it has become slow progressive. I wish you the best. You will be surprised to see just how many of your veins look like they're angelhair pasta instead of quarter inch vessels full of blood. And it's apparently mostle those same veins I mentioned bevore. I would be interested in knowin what Zamboni has with regard to the thoyroid glands, veins in it and MS. Has anyone actually read up on it yet? Alos, Marie, I did not get how to answer and be on the right forum and hope you get this. Best regards, Daisy
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Postby cheerleader » Sun Jul 05, 2009 9:55 am

Hi Daisy!
We made you your own thread....Just click on the link right below:


Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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