Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

IHateMS · Post by **IHateMS** » Wed May 27, 2009 8:31 am

I have read this thread and most others here.

Can anyone explain the Vitamin D component? It does not make sense that CCSVI causes MS when factoring in the geography theory of MS.

cheerleader · Post by **cheerleader** » Wed May 27, 2009 8:58 am

IHateMS wrote:I have read this thread and most others here.

Can anyone explain the Vitamin D component? It does not make sense that CCSVI causes MS when factoring in the geography theory of MS.

If we look to the genetic component of MS, it makes sense in the CCSVI paradigm. If, indeed, a certain percentage of the population is born with malformed veins draining the brain and spine (as happens in congenital renal, heart or liver disease) there might also be a correlation with inadequate vitamin D uptake and receptors. Many, many diseases are now being linked to low vitamin D levels, including autoimmune disease, heart disease and cancers. Genetic predisposition decides which disease manifests and how.

As far as geographic location, once again, if we view this as a genetic variant disease, we can see where many genetically related populations have settled...in Europe, Canada, Australia. Native/equatorial populations do not have as many issues with venous disease.

I've often mentioned how my husband doesn't fit with the geographic/vitamin D paradigm. He is a native Californian, outdoorsy guy, with basal cells from sun exposure!!! However, he fits the genetic paradigm....as his ancestors are German/English, he is very fair, and auburn haired.

The thing is, if there is a mechanical cause to MS in CCSVI, it really doesn't matter how the other previous theories "fit" to make it "real." So far, 100% of MS patients tested have shown stenosis in the jugular or azygos veins.
cheer

IHateMS · Post by **IHateMS** » Wed May 27, 2009 9:31 am

cheerleader wrote: The thing is, if there is a mechanical cause to MS in CCSVI, it really doesn't matter how the other previous theories "fit" to make it "real." So far, 100% of MS patients tested have shown stenosis in the jugular or azygos veins.
cheer

This is a fascinating theory. I agree about the fit. I am going to send the research to my SIL (who is a physician), my neuro & my PCP.

Thanks again.

mrhodes40 · Post by **mrhodes40** » Wed May 27, 2009 12:11 pm

"fit" to make it "real"

I am down with the point of view. I have reiterated many times that all of what we thought we knew about MS will need to be reevaluated in terms of this material to see HOW it DOES fit. Stenosis seems to be a fact, and it changes everything.

Here's an example: It has been known for a long time that MS patients have slowed blood flow through the brain. The explanation for that has been that the MS vessles are inflammed and blood is slowing through the area due to that....yet if these same people were just noting the fact, that MS blood flow is slow, they'd have been open to the other possible explanations including that BLOOD FLOW IS SLOW BECAUSE OF A STENOSIS or a CIRCULATORY problem.

But such an idea is not even considered in the possibilities of the research conclusion, the predetermined "knowledge" that MS is autoimmune means they never looked at the blood flow from a circulatory standpoint. They force any new findings through the lens of autoimmunity before deciding what it means.

something with regards to vitamin d has been overlooked and it needs to be seen from this paradigm to find out how it fits.

try this one, bot venous ulcer and MS lesions have TIMP1 and MMP9--in this case the article is on how this impacts heart disease --think blood vessels there--
http://qjmed.oxfordjournals.org/cgi/con ... /95/12/787

ANd again I was born in lousiana to an outdoorsy mother Dec 6th. When I had my d levels checked they were 55= 25d and 50= 1,25d. Totally NOT a fit, yet no one said I can't have MS--reason is that the vitamin D thing is a little MS epidemiological trivia it is not a hard and fast cause and effect item.

Besides which it may be true that we USE UP vitamin d at a greatly increased rate due to this venous injury.
marie

akaheather · Post by **akaheather** » Wed May 27, 2009 6:25 pm

This vitamin D angle never really jived with me either. Although I am fair skinned,blonde haired, blue eyed, and of Irish/German descent, I have spent my entire life basking in the sun. I was born in Texas and lived in Africa and Indonesia for most of my childhood. We swam and played in the sun EVERY day. Once we returned to Texas, I spent my entire summers from morning until dusk at local pool. I even worked as a lifeguard all through college. How much more Vitamin D could I possibly have gotten?

I am super excited about this new research. Finally something that makes sense!

On another note, has anyone figured out the blood thinning angle? I have been contemplating taking aspirin while I figure out how to get my neuro to get on board.

Which reminds me, are you guys seeing your neuro's or trying to get referrals from your GP/PCP?

P.S. Lew- I just wanted to let you know that I'm rooting for you. How many stenosis'/stenosii do you want me to pray for?

Loobie · Post by **Loobie** » Wed May 27, 2009 6:40 pm

I want the full Monte. I have so much spinal stuff which makes it bilateral in my legs and also my bladder is just about shot. Add the beet red face after running, and I'm hoping my jugs need unplugged too. This is so wierd. Here we are ASKING for things to be screwed up to get some relief. This MS shit sucks!

I didn't know you needed a referall, but that's probably a good idea for insurance reasons. I've been getting the shaft on that front let me tell you. My GP is really cool. I'm going to go see him and have him be the one that draws my blood every week and stuff. He cured my back and I won't forget that. I used to get the most painful spasms it would literally sometimes drop me to my knees. He's a DO and he just cranked on my spine and I (knock on wood) have not had one in well over ten years. He's very cool. I can now twist hard and crack my own back from tailbone to neck if I feel it stiffening up. It feels wonderful. If I come to him and I have my research done and it makes sense to him, he's just like "sounds good!" and writes me the Rx.

Sharon · Post by **Sharon** » Wed May 27, 2009 7:05 pm

Hey Loobie - you do not need a referral to see Dr. Dake - just call him - I think his office will work out the insurance stuff for you

Loobie · Post by **Loobie** » Thu May 28, 2009 3:45 am

That's what Angela had told me, but since I'm going to see him before this to go over the post op stuff with him, I thought I'd go ahead and just get one in case it helped.

Sharon · Post by **Sharon** » Thu May 28, 2009 5:17 am

Good idea sense you will be at his office anyway.

My GP is ready to go as soon as I get back from Stanford - I'm sure glad that Cheer and Marie "pushed" all of us to get the GP onboard before our trips to Stanford.

S

Arcee · Post by **Arcee** » Thu May 28, 2009 5:32 am

I agree. The push to get our own docs on board was wise and is much appreciated. I have an appointment set up with my PCP to talk about it next week, and my neuro is going to be available on the phone when we review the test results my first day at Stanford.

cheerleader · Post by **cheerleader** » Mon Jun 01, 2009 8:42 am

bump...
general stuff, discussion etc.

IHateMS · Post by **IHateMS** » Mon Jun 01, 2009 10:50 am

showed the study to my SIL, who is a physician. she thinks it makes sense. she is not sure if MS is caused by CCSVI or VV. She said there appears to be a link.

her first comment to me was ...... if you go to Italy, take a boat. Whenever I fly I seem to have an event. I then told her about Stanford and she mentioned a train/bus. She mentioned there is a correlation between flying and vascular problems because of altitudes and air pressures, etc.

Jamie · Post by **Jamie** » Tue Jun 02, 2009 10:30 am

I was looking for a heat connection, Mel's symptoms flare in the heat as do a lot of peoples.

It turns out one method of cooling (wikipedia) :

"Arterioles Vasodilation occurs, this is the process of relaxation of smooth muscle in arteriole walls allowing increased blood flow through the artery. This redirects blood into the superficial capillaries in the skin increasing heat loss by convection and conduction."

Now in my laymens terms if the body relaxes arteries to let more blood through then that blood has to come out again through the overstressed veins. Right?

Increasing reflux and thus symptoms.

Or clutching at straws?!

mrhodes40 · Post by **mrhodes40** » Tue Jun 02, 2009 10:43 am

No I think you are probably right, and note that the arterioles are part of the arterial system...which then has to go out through the veins.

The head is cooled with the help of blood flow, this really seems to possibly explain the MSers issue with that...if hot blood is regurgitatig around not getting OUT then the cooling won't happen efficiently.

cheerleader · Post by **cheerleader** » Tue Jun 02, 2009 10:59 am

Jamie wrote:I was looking for a heat connection, Mel's symptoms flare in the heat as do a lot of peoples.

It turns out one method of cooling (wikipedia) :

"Arterioles Vasodilation occurs, this is the process of relaxation of smooth muscle in arteriole walls allowing increased blood flow through the artery. This redirects blood into the superficial capillaries in the skin increasing heat loss by convection and conduction."

Now in my laymens terms if the body relaxes arteries to let more blood through then that blood has to come out again through the overstressed veins. Right?

Increasing reflux and thus symptoms.

Or clutching at straws?!

No, you're right this, Jamie...the heated and relaxed arteries will deliver more blood to the brain and create even more congestion, however it is the venous return to the heart which is most responsible for cooling the brain thru evaporation in the upper airways. If blood is congested in this area due to venous stenosis, the blood can not move thru efficiently enough to cool. Transit time is slowed. Wobbly, Marie and my Jeff have both shown improved heat tolerance since their procedures.

Another kicker is the hypothalamus- located at the base of the brain. Jeff's blockage created congestion in this location...slowing the messages of the hypothalamus. The hypothalamus controls body temp, fatigue, hunger and circadian rhythms. Sound familiar?? Since Jeff has had this procedure, he is eating more yet losing weight, sleeping more soundly, has no issues with heat and has relieved fatigue. I think we will find that the release of congestion to the hypothalamus has alot to do with the success of the jugular stenting in MS patients. IMHO-
cheer