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I’m still trying to get my head around all of the information that’s on here so forgive me if this has already been answered in another topic somewhere, but....

Are veins ever hampered in other areas related to the spinal cord? I see plenty of people commenting that tests revealed problems in the neck/jugular areas but is there any other veins that connect to the Spinal Cord outside of the head area, and if so do the CCSVI tests and treatments ever focus on them?

Mark.

Good question. Zamboni found one or two of the jugular veins to be affected in most RRMS/SPMS patients, and the azygos vein to be affected mostly in PPMS patients. Dr. Dake is finding a smaller percentage of azygos involvement in these patients.

Your confusion in itself to me also points to the question: if people with MS have problems in the cerebrospinal veins, wouldn't one expect them to also have problems in veins outside that area (legs, arms, etc)? This is the question I'm personally most interested in, but I don't think any of the researchers have looked at this yet.

And to add to your thought radeck, is a similar issue at play in other auto immune diseases? Might reduced blood flow cause inflamation in other organs that the immume system responds? If one disease is caused by this, is there a reason that others that are similar (type I etc.) also could be as well?

10years, it seems likely. E.g. the thyroid auto-immune diseases (Hashimoto's and Grave's). The thyroid veins run into the internal jugular veins, so low-down blockage in the latter can also cause problems in the organ fed by the former...

What I'm mainly interested in is whether we're looking at a venous disease, or at something that's caused by surrounding tissue/bones. E.g. lymph nodes becoming inflamed (by EBV during adolescence...) and the inflammation affecting the jugulars would be one hypothetical reason for stenosis (which would mean it's not a venous disease even if there's collagen change in the vein resulting from the inflammation). But then the question remains, why would the azygos vein be affected as well?

If on the other hand it is a general vein disease, leg and arm veins should be affected as well. To me this is the most important question not many seem to be asking: what causes stenosies? It seems that there are different mechanism at work. There are some that are obviously congenital malformations, like twists, veins pinched by bones, etc, but those narrowings without clear external reason, and with measured tissue change, may not be congenital.

The good news is that the process causing blockages doesn't seem to ravage a life long, because Zamboni's SPMS patients had similar stenosis patterns as his RRMS patients, despite being 10 years older on average.

Dr. Byung B. Lee - Georgetown University School of Medicine, Washington DC said at the Bologna conference on Sept 8 (from cheerleader) :


"Vascular malformations are from embryological defective vessels involved in the later stages of
embriogenesis. CVM can develop anywhere in the vascular system as a birth defect. The
vascular malformation is one of the CVMS which affects mainly the venous system. There is
much we do not know, and we do not know how much we do not know."

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Dr. Guilio Gabbiani from the Centre Medical Universitaire in Geneve, Switzerland said : "after inspecting muscle tissue from MS patients vs controls, by red staining for collagen and using unpolarized and polarized light, he saw that there is less
collagen 1 type fibers in the MS jugular vein tissue, and more collagen III fibers in MS. This is the
exact opposite of the controls. "

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Don't you think that these guys seem to imply that venous malformations of any kind are congenital ?????!!!!

Thanks radeck, that’s very helpful.

You are spot-on regards my pondering about other veins such as these. It can’t be a coincidence that the 40% numbness that I have in my arms/hands increases two-fold after several hours of sleep whilst lying in a horizontal position. I also wonder whether the throbbing feeling that I have around my femoral vein is an indication of poor blood flow in that area and perhaps one of the reasons why my legs are as weak as they are. Its fascinating stuff all of this and of all the various theories/tests/treatments available for MS, CCSVI has been one that really strikes a chord with me.

ozarkcanoer, I do imagine that some of the obstructions we've witnessed are congenital, i.e. where there are clear mechanical obstructions like bones squeezing in, missing jugs, twisted jugs, etc. However the "pure stenosis" kinds are a little strange to me. Dr. Lee wasn't talking about CCSVI per se, but other venous malformations.

The collagen changes seen in CCSVI could maybe also come about through inflammation of a neighboring organ, or something else. There's a correlation of MS and EB Virus, which causes mono in adolescence. Could it also cause stenosies? Some also claim to have had amazing success using antibiotics, also on the ABx TIMS forum. One would think maybe their stenosis went away, but unfortunately none of them are volunteering to get tested for that .

Note also that most people only develop neurological symptoms at mid-age. I just had my CIS at age 32 and don't have many lesions at this point. Does this mean my blockages aren't congenital, perhaps something that just recently started and will go away again?

Yes... Good reply. I can see the possibility of many possible sources of non-congenital stenosis. Time will tell, but I think we are barking up the right tree now.

Funny you should say that MS comes at mid-age. I wasn't diagnosed until I was 61 !!! In January 2008. Yep now you are talking to an old lady. 40 some brain lesions, none (as far as I know) on my spine. So how could I get to be 61 and then suddenly I was struck with MS out of the blue?

Lesions correlate poorly with symptoms.

Maybe the cerebral veins are able to more effectively re-route the blood that can't get through the blockages at young age? Aging starts in the 20's...maybe that's why everything breaks down starting at that age.

Ozarkcanoer, you see you're just younger than your age claims!

Here's another thought: A really interesting result would be to systematically look for iron depositions (instead of lesions) in children of people with MS who have CCSVI BEFORE they have started developing symptoms.

As iron correlates with disability, these depositions should suddenly start popping up when people get in the critical age range where MS begins.

For some reason (maybe the one I mentioned above, that the body is able to more efficiently re-route the blood at young age) given that they have no symptoms, they should be iron-deposit free despite the blockages at young age.

It's all quite curious, isn't it?

Yes... It would have been nice if Zamboni had had Haacke's MRI protocol all those years when he was following the 20 Sardinian children. Just think of how much more we would know. Would those children put up with being in an MRI machine, LOLOL ????

The question raised in this thread is one that I have pondered. In addition to MS, I have chronic idiopathic urticaria as well as Raynaud's Syndrome. Both of these conditions relate to temperature change, principally cooling. I have therefore wondered if they somehow relate to circulation, ie if there is some sort of vascular link to all this.

What I'm mainly interested in is whether we're looking at a venous disease, or at something that's caused by surrounding tissue/bones. E.g. lymph nodes becoming inflamed (by EBV during adolescence...) and the inflammation affecting the jugulars would be one hypothetical reason for stenosies (which would mean it's not a venous disease even if there's collagen change in the vein resulting from the inflammation). But then the question remains, why is the azygos co-affected so often?

It would seem likely that once research can look into those questions, an answer will be found. For years they have looked at the brain for what virus was the trigger (I had mono when I was 17). Maybe looking at the veins that were collapsed for something other than birth defect etc, we might finally have something.

Hi Pam,

pamf wrote:The question raised in this thread is one that I have pondered. In addition to MS, I have chronic idiopathic urticaria as well as Raynaud's Syndrome. Both of these conditions relate to temperature change, principally cooling. I have therefore wondered if they somehow relate to circulation, ie if there is some sort of vascular link to all this.

A couple of years ago, I started getting Raynaud's syndrome. The Mayo Clinic describes Raynaud's as being due to a spasm of the small arteries going to the fingers and toes. Due to unrelated issues, I switched over from taking a plain vitamin D3 supplement, to one with calcium, magnesium, and zinc. I have not had a reoccurrence of the Raynaud's for just over 1.5 years.

It's possible that a similar supplement regimen may help you as well.

NHE

Doing research on the internet I read that stenosis is caused by elevated homocysteine levels and a lack of B6 and foliates. Has anyone here had their homocysteine levels checked?