News report on my liberation

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

News report on my liberation

Postby wonky1 » Sat Feb 13, 2010 3:02 pm

Hi everyone
There was a news report on my treatment and the Buffalo results.

I thought you may be heartened by it.

<shortened url>
:D
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Postby whyRwehere » Sat Feb 13, 2010 3:06 pm

Yes, we saw that, well done! You're a star. :)
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Postby CRHInv » Sat Feb 13, 2010 3:12 pm

Awesome! You look good too!

Dr Doug Brown, Biomedical Research Manager at the MS Society, said: "These results are intriguing but it is important to remember that although people with MS may show evidence of CCSVI in screening studies, there’s no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS.


This no proof thing just bugs me. I know what they mean, but I tell you, I hope everyone can stay hopeful despite hearing this so many times.

Stay positive everyone!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby popsy09 » Sat Feb 13, 2010 4:59 pm

Hi

Great news!

was just wondering if you suffer from fatigue and have noticed any improvement and also did the treatment go well ie and problems with surgery?
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Postby jr5646 » Sat Feb 13, 2010 6:28 pm

Great interview, wonky1... Nice job and continued healing - Thanks for posting. Very good video graphic represention of ccsvi too..

The more press the better... even if they place the disclaimer at the end..

How many times have we watched drug commercials with extremely small print and a fast talking commentator squeezing all the side effects in... ???

Did you post in the tracking stickie? I hope to be posting their soon :-)
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Postby wonky1 » Sun Feb 14, 2010 3:44 am

Hi Beth, that no proof bit bugs me too. He's from the M.S. society here.
It does give me a good feeling though to see how far they are digging themselves in. Eventually they will have to admit they were wrong. I'll enjoy that.

Popsy09, I used to suffer from fatigue but not any more. In the clip I look very fatigued though, the day before I had massively overdone it at the gym. Then barely slept that night. The fact though that I was able to do so much without my fatigue stopping me was a good sign I think.
The treatment went well, there were no problems.
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Postby ClaireParry » Sun Feb 14, 2010 3:55 am

Well done Wonky. It's amazing to see you there promoting CCSVI.

You should be very proud of yourself!!!

Claire
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Postby CRHInv » Sun Feb 14, 2010 8:09 am

Hey Wonky,
Hold on to your hat, because, if you are like me anyway, the lack of fatigue just keeps getting better! I have gone from being able to get maybe one errand a day done at the most to being what I think is pretty much normal, and I even have more energy than some of my non-MS friends. I hope this will be your experience too!
Way to go!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby wonky1 » Sun Feb 14, 2010 8:27 am

Beth, I think I love you :D

Martin
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hello martin

Postby jak7ham9 » Sun Feb 14, 2010 10:58 am

i thought you sounded quite well and looked andsome. my question is you seemed quite stiff when the little bit you walked. i though you said your spasticity was gone. I only ask because spasticity (tightness is my biggest complaint ans when it reduces I move sinificantly faster and smoother. Maybe what I am seeing is weakness in that you need to build up muscle. I know I will need a ton of gym time after the opertion I just wonered. Barbara
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Postby Zeureka » Sun Feb 14, 2010 11:12 am

Wonky, so that was you 8)!!! Great video! And keep up improving!
I have seen the video but did not know...

Hey, who would have thought that so many on TIMS will be movie stars :wink: ?! I'm proud of you guys/girls! You are so active and help so much to move this all forward! You are so strong and amazing....! Thank You !!!

Steffi
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Postby wonky1 » Sun Feb 14, 2010 12:15 pm

Thank you all for your kind words.
jak7ham9 When I say I used to have spasticity, I mean I would spend most of the day laying glued to the sofa. When I tried to get up my legs would stay straight and I would have to try and bend them with my hands, not easy.
Since liberation that has not happened.
I still walk like frankenstein and I need to build muscle in my legs but overdoing it at the gym does not help the next day.
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Postby popsy09 » Sun Feb 14, 2010 1:25 pm

Thanks for your reply winky1, hope things continue to improve for you, keep us posted! :)
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Postby Cece » Sun Feb 14, 2010 1:51 pm

That was great, I thought it explained CCSVI quite simply and well!
"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
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Postby shye » Sun Feb 14, 2010 2:43 pm

Saw this before, didn't know it was you Wonky1
Good show!! and the explanation of CCSVI they gave was short, concise and better than most.

Dr Doug Brown, Biomedical Research Manager at the MS Society, said: "These results are intriguing but it is important to remember that although people with MS may show evidence of CCSVI in screening studies, there’s no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS.

I think the Drs are as confused as we are as to what MS is ! so they continue, in the light of true improvement, to issue these absurd statements.

thanks for this info and keep us posted Wonky1
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