some numbers...

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

some numbers...

Postby annbbe » Sat May 21, 2011 6:07 am

I'd like to talk a bit about my MS/CCSVI story.
I had only one procedure done almost 16 mnths ago. My vein is still OK. For over 2 years I have been relapse free. 4 mnths ago I decided to go off Tysabri (after 2 years of taking it). I was diagnosed 10 years ago. My EDSS is 4.

I am not sure what is going to happen, but now I feel stability. I am not cured of my symptoms, but i think the more i am relapse free the bigger chance for some improvements. We will see. So far, so good.
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.
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Postby Cece » Sat May 21, 2011 8:17 am

Big congrats on the stability with your MS and on the durability of that vein staying open!

Was it just one vein that was ballooned? I'd wonder if something was missed, if it was just one vein and you being one of the earlier patients to be treated.
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Postby 1eye » Sat May 21, 2011 12:57 pm

I salute you. From my jaded perspective, which does not apply at all to you, if it ain't getting worse, you ain't sick. We can do amazing things if we are allowed a chance to heal. If you can walk and you can work, and you're not suffering, great! Keep working on healing.

The doc will say, what if you do have a relapse? In the words of James Thurber, "Don't count your boobies before they're hatched." (You had to be there.) Keep that endothelium healthy. Follow the plan on
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