This Is MS Multiple Sclerosis Community: Knowledge & Support

Still would be nice to get a corsage!
Congrats, Alex. Let us know when you get scanned.
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cureo, I'm afraid no date for the Doppler scan yet. I reckon things plod along rather more slowly in Britain compared with Oz.

Does anyone else think the stenoses have a physical obstructive cause like calcification or cholesterol build-up? Why would our veins get blocked?

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

not sure, it's the spinal vein exit from the brain that gets blocked if i understood correctly. that's the one that does not have backflow preventers. so it doesn't have an inside-the-vein system pushing things along. i got the impression that that spinal vein gets used more when upright, so maybe it relies more on gravity and some kind of squeeze to get things through. and if the blood is thick it wouldn't go down as easily. if the walls of the vein itself are somehow used to squeeze contents through, anything that would interfere with flexibility might mess up the flow. what do you think?

Yes, the azygos vein runs up the right side of the thoracic vertebral column and according to wikipedia it communicates with the internal veterbral plexuses which seem to be veins in the spinal cord. Perhaps it is these that due to backflow cause a lot of our trouble. I'm not sure if the azygos connects to the brain stem. The drawings and the labels on wikipedia are very difficult to make out.
It just seems odd that all of a sudden and in our prime of youth these veins become blocked. It can't just be thick blood. I'm sure there is some more solid cause but I'm not getting much from pubmed.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

The azygous vein goes from the top of the thoracic spine (around T2-3, parallel to your scapula) all the way down to the lumbar vein at the base of the thoracic spine around T8. According to Zamboni, blockage/reflux in this area would contribute to demyelinating lesions above on the cervical and upper thoracic spine, and was seen in more progressive disease types.

There are 2 jugular veins, internal and external. Internal (the one Zamboni tested) is deep in the neck and collects the blood from the brain, and blockage here would create brain lesions, and was seen more in relapsing/remitting disease.

The majority of the MS patients Zamboni scanned had blockage in both the azygous and jugular veins. The more progressive folks had more severe blockage in the azygous vein.

With new scanning techniques, doctors are learning more about the azygous vein. Here's a study from earlier this year. This is all new frontier stuff...

http://mj.med.u-tokai.ac.jp/pdf/330205.pdf



AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I would like to learn more about this.

I've got the papers that are listed in Marie's thread. What I'd really appreciate having some links to are pages that will help me get up to speed understanding the vascular system. I'd like to learn about the basic stuff that this discussion revolves around. I'd like to understand how it's supposed to work first. Please and Thank you. Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Hey Ken-
The first post on this thread has a link to a pdf on the program I put together for my husband on Healing Endothelial Dysfunction. I'd been reading alot about molecular medicine and the endothelium (single cell lining of the blood vessels.) and followed a bunch of research on this site posted by Gibbledygook, dignan, Cure, Jimmy and many others regarding the blood. The paper is pretty easy to read. It explains the link of the vascular system to autoimmune disease, current research on endothelial dysfunction, why I followed this path and the results we've seen with the program. I've posted it on a hosting site for folks to download.
Here it is again-
link to pdf

Also search "vascular" and "endothelium" on the forums, and you'll get some more info.
As one MS spouse to another, I know we'll both be happy when this damned puzzle is figured out.
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

21 pages, great!

I'll be back.............


Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Cur-o said:


Right on! No one can deduce cause by effect.

Oddly my neuro said to me one time that MS has to be autoimmune and we KNOW that because immune suppression works. My response was "Huh???!" Well I guess all that progression is in my head.........
We must have different definitions of "works"

I wanted to wrap up some loose ends on this thread. I’ll be taking a break from posting, and I felt it was important that people have some resources for continuing the discussion of the links between endothelial dysfunction and multiple sclerosis-

These men and their teams are leading the research into the endothelium and the breech of the blood brain barrier in MS. This breech in the blood brain barrier allows cells to enter the CNS that should not be there. These doctors/researchers believe the signaling molecule of nitric oxide controls the process.

Berislav V. Zlokovic, MD, PhD
The University of Rochester Center for Neurodegenerative and Vascular Brain Disorders
link to Dr. Zlokovic's page

Professor Kenneth Smith, King’s College London
Wolfson Center for Age related diseases and multiple sclerosis
link to Dr. Smith's page


I would change nothing in my original paper. I believe the protocol works, and will slow down MS progression. If someone tries the protocol for three months and does not see remission, please post your findings. (money back guarantee!) If there are fine-tunings to the vitamin and mineral supplementation, please post as well. I’ll keep the paper up for another year (I have to pay for hosting.)

This theory encompasses all of the current scientific research in MS. Nitric oxide controls the blood vessels dilation, contraction, permeablility of the BBB and the body’s immune response. Nitric oxide signaling is disrupted by low vitamin D, hormonal imbalance, toxins, viruses, bacteria, heavy metals, trans fats, excess glucose, high altitude, cigarette smoking, alcohol as well as lifestyle factors like excess stress and lack of sleep.

Nitric oxide signaling can be repaired by high antioxidant intake, vitamin D supplementation and hormonal balance, proteolytic enzymes, regular exercise, a lowfat diet, and reduction in stress.

Until we have further scientific evidence of the linkage between endothelial dysfunction and multiple sclerosis, there’s no use just throwing out suppositions and arguing. It’s like religion....without scientific evidence, it must be on faith. I believe science will continue to prove this theorum...but only time will tell. I need my time back to take care of myself, my family and my previous professional and personal life. I appreciate all the fine minds here on thisisms. Jeff and I never would have found his stability and health without eveyone’s help.

Goodbye, and thanks for all the fish (Dr. Swank!)
Joan

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

The vascular doctor I have been consulting with recommended that we lift the head of our bed 6 inches, to use gravity at night, if indeed cerebrospinal venous insufficiency is part of Jeff's illness. Until we can get him scanned, we are still following the endothelial health program, and we raised the head of our bed last month. He's still doing great, feeling stable and strong.

Here's an interesting video on the "inventor" of IBT (inclined Bed Therapy), Andrew Fletcher. Many have said that this has improved their MS. I believe Zamboni's research on CCVI will soon explain why tilting the bed- so that deoxygenated blood can return to the heart- has helped those with MS. Certainly can't hurt!

http://www.youtube.com/watch?v=u3D7tBQfCxQ

AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Have you got a date for the scan?

not yet...Jeff's work schedule is pushing us into March, since we need to fly up to no. california and take a few days off. argh...
How 'bout you, Cure?

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Lovely plan, glad you posted it. If you have venous ulcers in the legs raising the foot is SOP. Makes perfect sense!
thanks Cheer! Good luck on your adventure! marie

I have a date with my neurologist for this (I am now up to 3 concurrent neurologists) on the 16th or 17th of feb. Although we have talked on the phone about nothing but the actual tests, this appointment was made with another assistant, and I have a fear that this may just be for an initial consult; she could not confirm either way.

Hopefully next week, I will confirm it with him directly.