This Is MS Multiple Sclerosis Community: Knowledge & Support

Here is lots of info about CCSVI and I tried to search more about stenosis? Especially what causes them? In ms I have always thinked that there is enviromental elemant + genes with MS. With environmental I'd think nutrition, viruses, poison, etc. Maybe things that effects / protects veins really has effect to ms course.

My wife has been on best-bet-diet since dx and in my opinion it has big influence - no symptoms, except some numbness related to menstrual cycle. I would bet that nutrition and blood circulation are related --> effects to veins, blood and immune system. But back to stenosis.. how they begin? and with time stenosis problem comes worse - what things causes this?

my bets on genetics/peace

No worries, I also bet on genetics.. and I'd also bet on environmental, like vitamin d, does D have straight role on stenosis? How is inflammation related to stenosis? What about blood consitution? Why high HDL-cholesterol protects with ms progress (research published not so long ago)?

Im like our 4 yrs old, lot's of questions!

Stenosis or atresia can be caused by many things and these stenoses have not been tested for any particular thing at this point.

For example Dr Simka mentioned he seems to see a May Thurner type stenosis, and in that disease the stenosis is caused by irritation to the vein sort of similar to a callous on your hand, caused by the artery being too close and whacking the vein repeatedly and making it hard.

Or they can be plaques like they see in arteries and in that case all the stuff that applies to heart disease will apply like the HDL etc.

Chlamydia pneumoniae is associated with all arterial plaques, and it is associated with MS in a good number of studies. IT may be the cause of these stenoses in many people--someone will need to test.

Or it can be tissue outside the vein pushing on it as it was in Jeff's, Sharon's and my case. We were born with a too tight area high in our necks that just pinched off the jugulars in that spot. Think of it like a person with crooked teeth--not everyone has that too small jaw that makes their teeth crooked but some do. In the same way we seems to have tissue that is just too much for the small space and the jugular being the smallest most easily compressible thing was the thing that got crushed down.

It is not going to be "one thing" it is going to be anything that blocks one of these particular veins and backs up the blood flow so the brain is constantly under some increased pressure.

I think potentially even a person with some kind of neck trauma that harms the jugulars could end up--years later--with ms. They probably would not even associate the original thing with the MS later on. I say that because MS is really so slow moving. If my jaw has always been this way and it is just now getting really bad , it may take decades for it to show up if one has a --lets say neck cancer-- and loses their jugs.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Thank you mrhodes40, very informative answer. I was'nt sure if for example Zamboni has comments related to stenoses. So there can be multiple causes.

MY wife has always complaint her neck, even before her dx. Massage has helped a bit, but then the problem comes back. She is sure now that MS relates to neckpain. Maybe that pain in neck relates to stenosis. Would be nice to have veins checked. Her fatigue and other symptoms vanished, that was a big relief.

Island girl has that neck pain problem too and it also thinking it is related to the venous MS issue..interesting! Island girl gets treated july 6

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Could it not be secondary to the MS? My worry is that an auto immune "problem" (possibly related to EBV anbd vit D) causes inflammation in the tissue around the veins, which in turn causes stenosis. This then causes the symptoms of fatigue and brain fog.

Hopefully someone can point to some evidence that this is not the case.

Hi Blunkett, (and your dog, too-)
We have two known diseases which begin as venous insufficiency and lead to activation of the immune system:
1. chronic venous insufficiency- blocked veins in the leg cannot transport blood back to the heart, leakage and reflux create ulcers which activates the immune system
2. congestive venous myelopathy- veins around the spine cannot transport blood back to the heart, leakage and reflux create demyelinating lesions on the spine which activates the immune system

There is no known medical condition which begins as autoimmune activation and leads to venous insufficiency. This does not mean it can't be so, but Ockham's Razor would suggest that we already know which comes first- venous insufficiency.

My husband's fatigue and brain fog were caused by 2 closed up jugular veins which were not transporting deoxyginated blood back to his heart, and causing slowed perfusion in his brain. Since his stents, he has regained his energy, and the fog has cleared. He also had terrific D levels, and no signs of EBV infection...what he did have was CCSVI.
cheer

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

Was he tested for EBV? This recent study suggests that 100% of MSers have the virus.

http://www.webmd.com/multiple-sclerosis ... RSS_PUBLIC

see also http://www.wheelchairkamikaze.com/2009/ ... ected.html

95% of Americans have EBV. There are millions of people carrying EBV who do not have MS. It doesn't matter. Lots of people carry HPV, EBV, cpn, lyme, viruses, bacteria....you name it. We are hosts to a multitude. And yes, these can encourage endothelial dysfunction, but they are not enough on their own to create CCSVI.

Jeff had impaired jugular drainage, because he was born with a tight neck, and it continued to close up as he aged. 100% of MSers tested have chronic venous insufficiency. I'm sorry if I'm getting snippy (re:bitchy)- I'm just done with the viral model. Done.
ps..his lumbar puncture showed no active virus.
cheer

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

123

Go right ahead Cheer, get b**chy!

We have learned so much in the past nine months which refutes some if not all of the viral model. EBV, HIV, cpn - I would not discount that the viruses could exacerbate the problem because if the virus is active it is in the blood stream. If you have a venous blockage, the tainted blood is refluxing into the brain or the spinal system. The body responds by activating the immune response. Get rid of the blockage, and the body can take care of the viruses as it normally would.

Like Cheer said, as Jeff got older the vein continued to close. Obviously, I was not born with a 3" blockage in my jugular vein; the area of damage has grown over the years. When you are young, the body can respond. Dr. Dake said that I had a highway system of secondary vessels which had formed to reroute the blood. That secondary system is not as strong when being formed so it therefore weakens as we age. Think about heart attack patients. Someone has a heart attack and finds out (two days after they have passed the treadmill test with flying colors) that they have a blocked artery. That blocked artery could have been there for years - sports injuries could be a cause. The heart was able to take care of the blocked artery because of the secondary vessels that were formed around the bad artery. The tread mill test showed the heart was balanced - the secondary vessels were doing the work of the blocked artery. So, the person goes out and exerts himself - oops, those secondary vessels are older, weaker and they fail - heart attack!

P.S. my lumbar puncture showed CSF culture with no organisms; AFB- no acid rast bacilli; fungus - no yeast; cryptococcus antigen- negative; no malignancy. NO VIRUSES - I did have oglioclonal bands.

Sharon

Can you tolerate one more? It's just a thought, feel free to tear it up.

When I had mono as a teen(almost 16 years ago), there were two notworthy things that happened that could possibly relate to the CCSVI/MS theory.

First, my neck(lymph nodes) swelled up so large that it felt like I had a golf ball under each ear. They stayed that way for almost 2 weeks. If I do indeed end up having a stenosed jugular, that couldn't have helped. Right?

Secondly, I recall having these white patches in the back of my throat. Were they called lesions as well? Could these patches have any relation to the lesions now occuring in the CNS?

Is it at all possible that one could have the EBV virus (which according to Cheer most people do), but that it does not pass into the BBB unless you have the perfussion caused by CCSVI?

Start shredding!

H

aka

As I posted above, I think this is a possibility. I also had mono when I was a teenager, but as I posted above in my P.S. there were no viruses found in my lumbar puncture. Some thoughts on the EBV side is that it has penetrated the blood brain barrier, causes inflammation and the damage. I would imagine it would remain in the CNS - I'm ramblin here - I have no idea. Anyway, it did not show up for me.

Sorry about seeming redundant. I was typing my post while you were posting and we crossed paths.