circulation (moved from tracking)

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

QUESTION FOR THOSE HERE DIAGNOSED WITH CHRONIC MS 7 YRs

Postby jbro » Fri Feb 11, 2011 8:09 am

There are many MS symptoms related to circulation -- Cold hands/toes and reddish color in feet; edema; blood pressure and others. Has anybody here diagnosed with CHRONIC MS FOR OVER 7 YEARS and who was given the CCSVI treatment, shown improved circulation?
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Cold Intolerance and CCSVI

Postby PatGF » Fri Feb 11, 2011 2:58 pm

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.
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Circulation

Postby fiddler » Fri Feb 11, 2011 5:45 pm

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.
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Postby jbro » Fri Feb 11, 2011 10:41 pm

Ted and Pat, thanks, that's exactly the info I need. What is wrt fatigue?

I don't think my insurance will pay for this, so I need to evaluate. Other than cost, another factor is whether the procedure is difficult to recover from. I've been in a wheelchair for 10 years.

But more than anything I would like to slow the progression of this disease, and increase my circulation.
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Postby bigfoot14 » Sat Feb 12, 2011 5:59 am

wrt = with regard to
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7 years

Postby fiddler » Sat Feb 12, 2011 6:17 am

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.
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Postby jbro » Sat Feb 12, 2011 10:12 am

That website and the timeline graphs do look terrific. It's wonderful that dedicated individuals created such a useful evaluating tool! I understand that the data from left to right is the number of months. What is being measured from bottom to top? Vertically.
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The numbers

Postby fiddler » Sat Feb 12, 2011 1:23 pm

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
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Postby jbro » Sat Feb 12, 2011 4:18 pm

After reading the instructions, I'm finally getting it, and the results look good, even for progressives.

What about you? Ted have you noted any benefits beyond less fatigue? Do your hands get cold less often? Are you more, less or equally temp sensitive?

I will try to persuade my doctors by pointing to the consistent data showing that people with MS have blockages, and should be treated for them, like any individual found to have blockages.

Why is it that typical vascular tests are not effective in finding blockages of the jugular and azgous veins?
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Improvements

Postby fiddler » Sat Feb 12, 2011 9:31 pm

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.
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Postby jbro » Sun Feb 13, 2011 11:56 am

My understanding was that many people with MS were found to consistently have 25% to 90% of their jugular or azgous veins blocked. Is that an overstatement? How to approach a typical vascular doctor looking for a CCSVI style test? I'm trying to figure out what to look for and how to find it [esp. b/c most doctors are skeptical/resistant].
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CCSVI found

Postby fiddler » Sun Feb 13, 2011 3:27 pm

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.
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Postby jbro » Mon Feb 14, 2011 9:22 am

Thanks for your guidance, Ted!
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