This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Guys,
First, a shout out to all of you guys who are forging ahead........Thanks to all you brave ones!

One of the more accepted aspects of MS is its geographic distribution. How does one marry the CCSVI theory with this?

Here is my quandry--- if we were only talking genetics, inheritance could be used to explain incidence geographically because of ethnic makeup in regions, for example, higher rates of MS in people of northern European ancestry living in indigenous areas. We could then look at CCVSI from a genetics point of view.

But what really stumps me is that ancestry/genetics alone doesn't explain MS distribution rates, geography is the key here- as in the example of one's risk rate going up when one moves from a low incidence rate to a high incidence rate before adolescence, independent of ancestry.

OK---I know there is a lot of brainy horsepower on here--so let it rip!

This has actually been tossed out about three times in the forum here as the reason this can't be the cause of MS.

I don't know if CCSVI is the cause of MS but I know it is associated. But there is a significant difference in vitamin d levels of people in lower latitudes and I assume it has to do with that which is exactly where the rest of MS research is with regards to vitamin D...in other words they have now figured out that vitamin d levels are low that d levels have something to do with it but they do not know exactly, precisely what it has to do with lesion formation.

The different theories have different ideas, for example if you are a germ person it is all about cathelicidins, if you are autoimmune it has to do probably with the overactive immunity being allowed to go out of control because d dampens it somewhat.

Whether MS is autoimmune, germs or CCSVI or a combination of those, in some way vitamin D plays in, and no one knows exactly how yet. But since this is a new idea someone will need to look at known things about MS STARTING from the fact of CCSVI and seeing where that takes them with regard to vitamin d and sunlight and latitude. A significant amount of new research will be engendered for MS based on this new understanding.

It may be that veins have weaker juncitons with low vitamin d and things leak out more often therefore lesions are more likely , I do not know but somethings like that need to be considered by people smarter than I.

there is nothing with regards to venous ulcers and vitamin d. Venous ulcers are more prominent in spring and fall as is MS though.... bet you did not guess that did you?

They've also been increasing in incidence too, up 28% since 84..... Didn't guess that either... No one would have and that's what I mean research will need to look at this from this new angle and people need to give up the idea that the MS trivia we know, like the vitamin d thing, means anything. It doesn't. It is trivia that does not impact patient care.

No one says to me "Hey you were born in early Dec to a vitamin D replete mother in Louisiana, you can[t have MS" See what I mean? it means nothing really because it is all about trends not facts. . But I do have a stenosis......

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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

Hey sojourner...
not so sure about the brain power, but I'll take a swing at your pitch

I think the problem is trying to make this new peg, CCSVI, fit into the old hole of MS studies...
I've often written that my husband doesn't fit any of the studies for MS. He just shouldn't have MS. He is a man, born and raised in California, in the sun with basal cells to show for it. He never fit the "profile" in the first place.
What he did have were 2 closed jugular veins, with reflux going into his brain and cervical spine. And he had 20 lesions to show for it.

As far as folks that move to Colorado and get MS, that's a different scenario. I figure that's a pre-existing venous situation exacerbated by high altitude/less oxygen. My hubby's first flare came after a week at high altitude...and he had several "altitude sickness" events in our 25 years together....what we now realize were created by his oxygen starved brain being depleted.
hope this makes some sense-

And I agree with what Marie says...how can finding the "cause" of MS be tied to studies which presume so many things that AREN'T 100% TRUE in all MS patients??? The only thing we have so far that is true in 100% of MS patients is multiple venous stenosis in the jugular or azygos veins. That, and the fact MSers are human beings on planet earth....
cheer

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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

My thoughts on this are the diet of people in certain areas may worsen the CCSVI. Northern latitude peoples are eating a higher fat diet. Lots of dairy products. Just shooting from the hip on this but might be a big part of the reason. As far as the increase % of ms this also fits with the distribution and consumption of high fat foods have also increased. Now there are and always will be exceptions like myself who just do not fit. Were closing in on the reasons but the variables will always make it hard to pinpoint the cause. Cheers Mark

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Plant a BIG Garden Live in the Moment

Try this one, I bet Marie likes it......

1) Much speculation suggests that there are more than one causation of MS.
2) Let's say there's 3 pathological causes of MS
3) If one of them is CCSVI
4) That leave's 2 of them to be something else that has a geographical component.

I think the common word to be found in all 3 pathologies will be "disorganized". Ken

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

Could the geography of gravitational pull have something to do with it all? We need that chap andrew of inclined bed therapy to engage in this discussion but I recall he said that the gravitational pull of the earth differs according to latitude. However I know nothing of physics/geophysics and I could have understood this wrong. I felt that the inclined bed therapy improved my bladder control and my reaction to steroids recently. The idea with the inclined bed is to increase gravitational pull during sleep. This therapy is said to improve varicose veins and circulation.

As I reread the above it sounds completely mad. but then again so is particle/quantum physics, so who knows?

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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,

Ha! Anyone dealing with this maddening disease is bound to become a mad hatter themselves!

I have heard an interestingly similar theory about gravitational pull/magnetic field gradient, and the natural disposition of nation states. Whose to say what is mad......when we know so little about anything.

Just to clarify, I asked the original question to illicit responses from people I feel are experts here, not to "debunk" the CCSVI theory. And, I didn't know it had already been discussed.

I do find it very interesting that 100% of PwMS seem to have blockages, and love the intellectual exercise of inquiry. Plus, besides a husband and sister with MS, I have a currently 17 yr old who, when imaged at age 16, had increased perivascular spaces. Although not specific, this finding did not give me a warm and fuzzy feeling with regard to her longer term health.

Back to the geographic distribution-I'm not sure I correlate this distribution with vit. d in either sun exposure or diet as a forgone conclusion--there are other explanations.

If I may stray and ask another question-----What about the relapsing remitting nature of the disease. How does that fit into this new schema of reflux causing damage? And if this has already been asked and answered, sorry ahead of time.

I lived all over the world growing up, so I don't know how I would fit. I lived in colorado, texas, turkey, germany, nj, colorado again and now texas.

I was dx in Colorado.

Hi Sojourner-
Here's the link to the thread on relapsing/remitting. There's 5 pages of discussion.
http://www.thisisms.com/ftopict-7240.html

I find that the search function really works for these boards. You can search CCSVI + relapse + remitting and click the "seach for all terms" function. It's a great way to catch up on the many pages of discussion, and find the things that interest you-
best,
cheer

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

With regard to Vitamin D--there's now information that it is protective against hypoxia in animals.

Neuroprotection by co-treatment and post-treating with calcitriol following the ischemic and excitotoxic insult in vivo and in vitro

"Hypoxic preconditioning" was the recommended neuroprotective strategy of the researchers who found upregulated genes protecting against hypoxia in NAWM of people with MS. Vitamin D could be better than that.

At least a clue perhaps to a connection between CCSVI and geographic distribution. The neuroprotective properties of Vitamin D just haven't been recognized in MS research.

Take care all

Sharon

Whoo hoo. Thanks, Sharon. You rock.
Vitamin D for hypoxic protection!
Thanks for providing another puzzle piece,
cheer

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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 am so glad you noticed this Sharon, you have a great mind and I am really grateful that you are spending time here thinking about this subject and sharing your thoughts.



I am pretty sure no one was thinking Ms was a hypoxic disease before, this is a new model here

As we look at these kinds of MS findings that we all know so well from this new perspective it becomes very clear that scientific research starts with a bias and they stay sort of in the same rut with regards to evaluation of what they think they see.

For example looking at slow mean transit times for the blood going through the MS brain and making the leap that it has something to do with the presence of lesions and inflammation and completely ignoring the circulation has less to do with what was actually seen in that experiment and more to d o with what they thought MS was in the first place

_________________
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

Thanks for the comments--much appreciated. I have to say though that the Vitamin D "discovery" was born out of my ignorance.

I didn't have a clue what "ischemic preconditioning" was in this abstract

so, in trying to explore what that was, up pops the Vitamin D info.

Take care--you're so right Marie about the research rut...

Sharon

to my understanding, Finland (in Northern Europe) is the promised land of all vascular diseases, we have all kinds of them, and to my understanding, at least some of them are inherited. For example brain aneurysmas are more common in Finland than elsewhere (e.g. some research here http://research.med.helsinki.fi/neuro/n ... efault.htm).

SIDESTEP TO GENETICS..In Finland there is also genetic change in tolerating lactose, it has been studied a lot by genetics. It's also relatively easy to do genetic study in Finland since we have quite good reference on older relatives from church books (they were recorded so) and people have not moved much. We're processing milk so much in industry, that some people cannot tolerate Finnish milk but can use it abroad. It may be the homogenization of milk that they do after pasteuring it. But anyway, I learned from Leena Palotie's (leading Finnish genetics professor) presentation that something like 90% of world's people cannot tolerate lactose (milk sugar), but they do not consume it so much that it would notice it. So there is genetic change in Finland that allows most people to tolerate lactose.

My theory is clusters and locations caused by congenital defects where there are concentrations of certain triggers be they viral or toxin based that cause vascular deformities pre-birth.

If it wasn't pre-birth it is unlikely kids would ever get MS.

Remember its not just blockages its all kinds of funky stuff, multiple IJV's, twisted IJV's etc.