CCVI/ EBV link?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Lars » Sat May 09, 2009 11:20 pm

Chris,
Point being, what causes the weakness? A genetic disposition is one thing and possibly/hopefully it will help. But if, for the majority of those with MS there is an underlying cause, where does it end. Fix one vein and hopefully it does the trick but who knows if the weakness will present again in a different location. Discovering the trigger, if perhaps there is one, seems the logical course of action.
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Postby px125 » Sun May 10, 2009 3:39 am

Hi all,
I agree with chris.
The CCSVI hypothesis is made on FINDINGS OF VENOUS OBSTRUCTION in patients with MS and not in patients without. It's not a theory about autoimmunity.
In every autoimmune disease the immune system is EVERY TIME described as the "actor" of the process, in medical terms it's a matter of PHYSIOPATHOLOGY and not AETIOLOGY or EARLY PATHOGENESIS. No one know, in EVERY AUTOIMMUNE DISEASE, what triggers the autoimmune system. All research in this field try to go deeper and deeper tryng to understand the mechanism, but if you don't know what happen AT FIRST you see all the movie but not the prologue.
If you read about thousand and thousand reasearch about MS you can see how we are going deeper and deeper with the "microscope": from Charcot to now, we passed from macroscopic study of lesions to molecular studies on lymphocites: if you go on focusing on a single molecule, single cells and single proteins in such a complex system as the human body, you'll better understand the mechanism but it's very hard to find a single cell that will tell you: "Hi! You discoverde me, Now I'll explain you why I decided to attack myelin!!!"
I don't mean that molecular research is unuseful, but I believe that when you are lost in a labyrinth (and it goes more complex and more) if someone offer you a ladder, you can try to climb and see everything from the top.
I dont' know if CCSVI is causative, but this hypothesis, at least through very large scale studies using doppler-angiography-MRI angiography and so on... should be tested quickly. I hope some group had yet started...

BTW: I'm a neuro and my sister has MS
I'm with you all, kisses
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Postby Loobie » Sun May 10, 2009 4:21 am

chrishasms wrote:I just can't figure out the harm in doing this. If you have a vein that is too skinny or blocked why would you not want to open it up?


This is how I'm looking at it; whether causative or effecticative (new word :lol:), I'm of the same ilk; fix that dude.
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Postby Lars » Sun May 10, 2009 8:41 am

Loob,
I totally agree. The point of this thread to begin with was not to undermine this theory or dispute it's relevance but only to play devils advocate and question the science on a deeper level. I have a hard time buying that CCVI comes with a Latitude map.
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Postby Sharon » Sun May 10, 2009 9:22 am

Lars -
have a hard time buying that CCVI comes with a Latitude map.


It does seem kind of odd doesn't it? But, on the other hand if we go back to a possible genetic link - Northern Europeans. Where are your ancestors from? Where did they settle in the United States?

Other diseases have similar connections. Did you know that the mild form of Lupus(skin disease SLE) is associated with Northern European while the more severe form is associated with Southern European ancestry? See link
http://www.arthritis.org/lupus-southern-europe.php

The differential distribution of MS by latitude was further reanalyzed for ancestry; high rates were correlated with northern European ancestry

See page 127
http://tinyurl.com/o9zrtl
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Postby mommasan » Sun May 10, 2009 10:48 am

Lars, I am with you 100% on this. I think I commented on this on another thread. All of this research has to be pulled together to include all of the facts- not that we know them all yet.

Sandy
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Postby Lars » Sun May 10, 2009 11:46 am

Sharon,
OK, I'll bite. I am 2nd generation Swede. My Father immigrated in the early 50's so I definitely fit the MS profile. If it turns out that there really is venous insufficiency across the board with those of Northern European decent, I think I will be in line with a ton of people who would now find that notion unbelievable. It would be a great study!!!! I fully believe that many with MS have CCVI but, if it were the actual cause, it would know no borders.
Be Well,
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Postby mrhodes40 » Sun May 10, 2009 11:55 am

px125 said
should be tested quickly. I hope some group had yet started...


Thanks px! I feel like cheering when I hear that...YES!! I am sorry for your sister, but you are in Italy so you can get the best possible treatment soon, yes?

this is not just another newer better immune suppressant; it is a 180 degree change from the direction we have been going. BECAUSE OF THAT this research is vastly more important that it would be otherwise.

I also agree with the comment that this, a physical verifiable fact, is showing so far in 100% of MSers, and that since anyone can get tested it is almost academic to wonder about latitude (check link)or HLA types or genetics in the DRb 1501. It is moot.

It is moot if you live in texas and have MS too...I was born to an outdoorsy mother December 6 in Louisiana, so Im not fitting the epidemiology there. These little factoids are kind of MS trivia, they make you think we know something but they are not meaningful. example: no doctor said to me "Born in Louisiana in December? can't be MS then"

Really there are some inconsistencies but it does not matter because if this is the cause of MS eventually we will clear that up with research why this is true if CCSVI is MS, no one has to accept this idea right now in its infancy. Some of us have studied the idea enough to offer ourselves for SURGERY 8O to see if it makes a difference, every single person with MS, believer in this idea or not, will benefit from that. Those people stepping up are doing so at some risk to themselves for unsure gain, but they have read enough to understand that it is promising so want to do so.

I'm leaving for standford in 6 days.

You're all welcome :wink:
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
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Postby cheerleader » Sun May 10, 2009 1:03 pm

mrhodes40 wrote: Some of us have studied the idea enough to offer ourselves for SURGERY 8O to see if it makes a difference, every single person with MS, believer in this idea or not, will benefit from that. Those people stepping up are doing so at some risk to themselves for unsure gain, but they have read enough to understand that it is promising so want to do so.
I'm leaving for standford in 6 days.
You're all welcome :wink:


My Californian husband (who gets so much sun and outdoor exercise, he's had basal cells removed) born in a lower latitude in late June as a male without any other autoimmune diseases, who never smoke or drank, says THANK YOU, Marie!
lol,
cheer

Welcome, PX125! Ciao, bello e molti baci oxox
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby px125 » Sun May 10, 2009 1:58 pm

Grazie per i baci!!!
And thanks to you and mrhodes40 for the welcoming

It's since about one months I'm reading you all every day in CCSVI forum...
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Postby mrhodes40 » Sun May 10, 2009 2:08 pm

Wow px 125! thanks! I am glad you are reading our pages...
the more the merrier :D
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
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Postby cheerleader » Sun May 10, 2009 2:50 pm

PX125-
We didn't answer your question. Yes, there are a few groups studying this connection to CCSVI and MS right now-
Dr. Paulo Zamboni at the University of Ferrera, Italy (the discoverer of this process)
Dr. Michael Dake, Stanford University, Palo Alto, CA, US
Dr. Marion Simka Department of Angiology, Private Healthcare Institution SANA, Pszczyna; Poland

We hope to involve others doctors and universities as the research progresses.
I like your description of the difference between the macrocosm and microcosm in MS research.
If you read about thousand and thousand reasearch about MS you can see how we are going deeper and deeper with the "microscope": from Charcot to now, we passed from macroscopic study of lesions to molecular studies on lymphocites: if you go on focusing on a single molecule, single cells and single proteins in such a complex system as the human body, you'll better understand the mechanism but it's very hard to find a single cell that will tell you: "Hi! You discoverde me, Now I'll explain you why I decided to attack myelin!!!"

I also agree that since Charcot's time, neurologists have delved further into their "specialty" and have studied the brain to the exclusion of the other systems.
I hope your sister is managing with her MS, and that you will offer us more of your insight as a neurologist.
all the best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Sun May 10, 2009 3:56 pm

from Marie -
Really there are some inconsistencies but it does not matter because if this is the cause of MS eventually we will clear that up with research why this is true if CCSVI is MS, no one has to accept this idea right now in its infancy


So true! -
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Postby Lars » Sun May 10, 2009 7:29 pm

To fully make the most important point; To all who have or will be brave and committed enough to seek answers according to their research, ideals and thinking beyond current therapies........YOU ROCK!!! The answers lie in those who put themselves on the front line. Most people associated with this forum are those people. That is why I am here and why I am happy to have found you all.
Peace,
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Postby chrishasms » Sun May 10, 2009 9:40 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 1:20 pm, edited 1 time in total.
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