A plea for patience

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

A plea for patience

Postby fogdweller » Thu Dec 10, 2009 6:36 pm

I am very, very excited about this new information and wonderful hope. And I too was in the process of getting in to see Dr Dake for evaluation and possible stenting. I was very disappointed when the plug was pulled on that possibility. I am 57, have had PPMS for 35 years, and knew that new drugs took 15 years or so to develop and there was nothing eathishattering in the pipeline. As far as any real hope in my lifetime, I was beginning to do the math ...

However I believe that a scientific study is the right thing to do. It will provide scientific rationale to those working in this area. A study will also provide the investigators with "cover" to investigate freely. If there is an institutionally approved study with an approved informed consent, the investigator is protected.

And although it is frustrating to those of us who may have to wait months and months for some treatment, the fact is that a well publisized mishap or two could set the entire effort back many years.


As much as I hate the delay, we need to be patient.
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Postby ozarkcanoer » Thu Dec 10, 2009 6:46 pm

:D :D
fogdweller,

It's very nice to meet you !!

There are scientific studies going on right now !! We are all breathlessly waiting for the result of the Buffalo BNAC clinical trial. And Dr Dake's upcoming CCSVI Liberation Procedure clinical study at Stanford. And the new study in Amsterdam. AND Dr Haacke and associates are studying his (Haacke's) MS-MRI protocol. Maybe tomorrow someone else will pop up with a new study. That is how this has blossomed over the past year : Dr Zamboni published his 2008 paper on CCSVI and MS; cheerleader read it. Cheerleader went to Stanford and convinced Dr Dake to rock the boat. Meanwhile, back at the ranch, Dr Zamboni corralled Dr Haacke and many other scientists at the September Cenaculum in Bologna. Then the documentary. And today although patience IS a virtue, many of us are very very hopeful... and some of us are liberated.

ozarkcanoer
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Postby paulmur » Thu Dec 10, 2009 6:52 pm

FogDweller, Thank you so much for a very rational take on these recent events. 35 years has been a long time to wait. I pray that soon relief will come for you. What will your new nic be then?
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Postby judipom » Thu Dec 10, 2009 7:20 pm

When I get my veins done I'm going to PAAAHTY like I haven't done in 13 years. That's a promise. Judi :lol:
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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Postby Shannon » Thu Dec 10, 2009 8:26 pm

I can't wait to get my veins done so that I can eat cheeseburgers and cake! :lol: Been trying to stay away from all saturated fat (which is a great idea for everyone), but I would just have to splurge and go for the double quarter pounder with fries and a shake. :wink: Just sayin...
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Postby ClaireParry » Fri Dec 11, 2009 5:26 am

judipom wrote:When I get my veins done I'm going to PAAAHTY like I haven't done in 13 years. That's a promise. Judi :lol:


Me too! And if I can do it in heels mores the better - although maybe thats too much to ask for!!!

Claire
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Postby Algis » Fri Dec 11, 2009 6:30 am

Don't forget to invite me :P
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Postby judipom » Fri Dec 11, 2009 7:51 am

Open Invitation to Thisismsers. Even if they live in Thailand!!! Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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