BECOMING A COMMON STORY

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

Postby codefellow » Mon May 16, 2011 12:35 pm

WeWillBeatMS wrote:
Ernst wrote:My wife got incredible and wonderful effects about 11 months ago, quite soon after operation. We had wonderful week and we were bot really surprised the effects she got --> fatique disappered, weaker side of body got stronger, heat intolarance became normal, etc.. and it felt like a miracle.. but about week after procedure her MS symptoms came back little by little. She got very disappointed and I tried to engourage her. But after two weeks with same situation, I was also disappointed -- and we were sure that there is re-stenosis. But 3 weeks after her condition began to improve, just like after op.. and we were once again surprised and extremely happy. And now, 11 months after her condition has been steady, and MS-symptoms have been away. Two years before operation, she couldn't exercise proberly, but last 6 months she has been able to train hard. Would be very hard to think this as placebo, no way.


That's what I'm talking about! :D Re-Destenosis!

WeWillBeatMS



I have heard of this before from a woman who had the procedure and maintains a mailing list of people interested in CCSVI. Her improvements came while she was on the table, disappeared after a week, then after another week, came back again. Her IR said this was common and described a seven-day cycle. The vein(s) may react to the insult of being balooned by becoming inflamed, so improvements you felt on the table disappear. Once the vein swelling goes down, the improvements return. That's what I understood, anyway.
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Postby WeWillBeatMS » Mon May 16, 2011 1:28 pm

That is extremely interesting.

Thank you codefellow.

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Postby WeWillBeatMS » Mon May 16, 2011 2:13 pm

scorpion wrote:That said I would openly welcome CCSVI being the real deal so I could get rid of some of the damn cog fog I am feeling today.


You and me both. There are times I can't remember peoples names for anything. I mean people that I know well. It's embarrasing. I'd also like to get off this Tysabri Russian roulette that I play every four weeks.

I just don't get you saying that you don't believe in the condition of CCSVI. And that you believe the results that many people are getting from improved blood flow by having the Liberation procedure are from a placebo effect.

I don't get it.


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Postby 1eye » Tue May 17, 2011 5:42 pm

WeWillBeatMS wrote:
Ernst wrote:...anecdote...


That's what I'm talking about! :D Re-Destenosis!

WeWillBeatMS


Unfortunately my right-side problems did not show up on the same schedule as yours. I am likely older, too. I can hope, that those things happen for me, too, before I give up and submit to another catheter. I have a lot of cycling to do first, and a bit of other exercise, as well.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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