This Is MS Multiple Sclerosis Community: Knowledge & Support

I was diagnosed in 2006 but have had MS for probably 10+ years. It is 6 weeks after CCSVI and was able to go to Vermont (14 degrees below zero weather) for a dogsled ride. It never would have happened before. My toes are warm and I actually am too hot at night for a down comforter. I will have to put it away. I can't wait to see the improvement in heat tolerance in the summer.

Jbro, the most common "immediate" improvement quite a number of people have seen is a reduction in the "cold feet syndrome". On the site http://www.ccsvi-tracking.com, where they show the results of over 450 treatments, I think that it falls under the "sensitivity" category, where 69% have seen marked improvements. Unfortunately, though I've had other significant improvements (especially wrt fatigue), my feet are still often cold.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

wrt = with regard to

Yes, wrt means "with respect to" or "with regards to". And as far as recovery goes, many people do this as a day procedure. Except for a few who have had complications, the procedure is pretty easy and simple, and the recovery is the same.

By the way, jbro, I forgot to mention that on http://www.ccsvi-tracking.com you are also able to go to the timeline graph to see people's results over time and filter out for only people who have had MS for over X years, people with an EDSS of below Y, etc, etc, etc. It's really a powerful tool for understanding the results that liberated people are seeing over time. This is a great site designed and developed by some of our liberated Dutch MSers and they promise more capabilities in the future. I would again appeal to all liberated people to register and enter their data. The health research community isn't interested in doing this for us, so we have to do it ourselves.
...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

The meaning of the numbers on the vertical depends on what is being measured. For example, for EDSS it is taken right off the EDSS scale. For other things they are where either the best or worst are set at 10. So good QOL goes up, good EDSS goes down.
...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Besides fatigue, my balance, strength and mobility have markedly improved (as noted by me, my physiotherapist and my neurologist). My hands have never been a big problem, but my feet are often too cold, but also sometimes too hot. Since it was always an on-again/off-again thing, it's really hard to say if there has been a change that is in any ways significant.

I'm not sure if I understand what you mean about "typical" vascular tests, but I think that CCSVI is a very different way of looking at things, even for vascular specialists, who weren't aware that slight, long-term reduction in blood flow could have such a devastating effect on the CNS (central nervous system) because of hypoxia, blood-brain barrier breaches, and iron deposition. I'll give you an example: my GP (who is generally supportive of my liberation treatment approach) said that hypoxia is caused by problems in arteries, not veins. When I said "But if the veins are occluded, there is no blood flow, so the brain lacks oxygen (ie, hypoxia)", he said "Oh!"... because he finally understood!

There is still a lot for everyone to understand.

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Yes, people who do the CCSVI testing and treatment seem to be consistently finding over 90% of MSers with venous drainage problems. Lower percentages are usually only found by people who don't know what they're looking for. Unfortunately, just reading up on it is not good enough, apparently. Testing and treatment is usually done by interventional radiologists with support from vascular experts. Right now there are a lot of people in the US doing the testing and treatment, so it might be easier to find one of those than trying to convince a local specialist to study up on it. On the other hand, if a local specialist did become interested, we'd have one more place for treatment and you'd have local support.

On this site (and various facebook sites) there is a lot of info that can be taken to your GP and then to IRs and vascular specialists.
...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com