has anybody ever thought of this?

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

Postby Cece » Thu Mar 31, 2011 8:15 pm

codefellow wrote:
Cece wrote:That is a scary thought.

If we accept that the stenoses are congenital, formed during the embryonic period, then this scenario is not likely. uni0n of phlebology consensus. Also the wide variability of stenoses found in CCSVI.


But why should we accept that stenosis is congenital? What evidence do we have of that, other than specialists from 47 countries deciding that it is?

They are malformations, badly formed. Forming occurs when we're embryos. Think of valves in the heart: if you have a malformation, it's there when you are born, but if it's normal when you're born, they don't become malformed later on, afaik.

I had symptoms since childhood, and the autoimmune theory never explained that well, but CCSVI as congenital malformation does. It is a relief to have it make sense, looking back.
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Postby Filmmaker » Thu Mar 31, 2011 8:31 pm

i agree with the heart example but children born with heart malformation have symptoms right away, at least before 7 years old... not MS patients...
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Postby CenterOfGravity » Thu Mar 31, 2011 8:54 pm

Filmmaker wrote:i agree with the heart example but children born with heart malformation have symptoms right away, at least before 7 years old... not MS patients...

Not true, I've known 2 personally who had hidden congenital heart problems who died prematurely (one early 30s, other late 30s) of heart attacks, when seemingly healthy. Or someone more well known, like Sergei Grinkov, world class athlete, who died in his late 20s due to the same thing. And he had top notch medical care and they still didn't know until he died. Some congenital things do take years before the problems become known.
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Postby codefellow » Thu Mar 31, 2011 9:35 pm

CenterOfGravity wrote:
Filmmaker wrote:i agree with the heart example but children born with heart malformation have symptoms right away, at least before 7 years old... not MS patients...

Not true, I've known 2 personally who had hidden congenital heart problems who died prematurely (one early 30s, other late 30s) of heart attacks, when seemingly healthy. Or someone more well known, like Sergei Grinkov, world class athlete, who died in his late 20s due to the same thing. And he had top notch medical care and they still didn't know until he died. Some congenital things do take years before the problems become known.


Somebody help my shaky memory. Did not Zamboni check for malformations in some pediatric patients and follow them through to adulthood, finding that some of the patients did indeed develop MS?
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Postby civickiller » Thu Mar 31, 2011 10:09 pm

What about stenosis from an outside source in the body? Bones putting pressure causing stenosis. CTOS. Can explain restenosis soon after getting treated, if you don't correct bone interference, it will happen again.

My twin brother doesn't have MS, the only thing in our lives that where different, we did everything together till after college, I was diagnosed in college. was I took protein shake and around age 13 I fell off a tree landing on my back.

I don't think we focus enough on the causes of stenosis, just how to fix it
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Postby se1956 » Thu Mar 31, 2011 11:47 pm

The development of MS matches very goog with general venous diseases:

often starts in the age of 20-30
life long slow disease
more women
congenital disposition

R.
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Postby Wonderfulworld » Fri Apr 01, 2011 1:35 am

Also the ANA test routinely positive for other autoimmune diseases is negative in MS patients.

Not necessarily - I have tested + for ANA.
See also: http://pn.bmj.com/content/4/4/212.abstract
http://www.ncbi.nlm.nih.gov/pubmed/9303591
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Cece » Fri Apr 01, 2011 8:21 am

codefellow wrote:Somebody help my shaky memory. Did not Zamboni check for malformations in some pediatric patients and follow them through to adulthood, finding that some of the patients did indeed develop MS?

Yes. The Sardinian children:
www.thisisms.com/ftopicp-154493.html#154493
www.thisisms.com/ftopicp-107877.html#107877
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Postby belsadie » Fri Apr 01, 2011 11:03 am

As I read this information/opinions.etc.etc.etc.my head was spinning. Veins take the nasty stuff AWAY. Why clog off the exit route? Often, family members share the dx of MS..heredity? WOW, let's give this new hypothesis time to either contribute to our knowledge base [which seems rather thin,now ] as important or dismissed as 'good try, but no good"
You'd be better off using all that energy to find an IR that can test /treat for CCSVI and contribute to the data gathering process.
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Postby Filmmaker » Fri Apr 01, 2011 9:26 pm

Well, how about people who restenose, and people who get worse from the liberation procedures? Is that the hope you want to give them?... MS being congenital, maybe even genetical? Is that the hope you are looking for?... Once you are progressive there is nothing liberation can do for you, is that what you call hope?...
I agree with the fact that we concentrate on correcting the stenoses while we don't even know their cause, how can you correct a problem if we have no idea what it comes from?
Let's ask a simple question: what are the plaques?!!! What are these organic things deposited on the brain and called lesions?!!! have we identified what it is?
Well if we haven't I can tell you the answer: collagen!!! It's the collagen of our brain... just like collagen is "eaten" in RA (rheumatoid arthritis) for example, in our case it's not the collagen of our bones but our brain.... What happens when a tissue looses its collagen? It becomes more and more liquid (our body is about 70% water and 30% collagen -proteins... Have we identified stenoses in RA patients too? Do we know how collagen deposits are created by/from vein stenoses?! it's just obvious that this theory of CCSVI is only a minimal part of the whole problem, and helping the venous drainage is still not recreating our brain collagen... So please, help the research but identifying the real issue.
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Postby Johnson » Sat Apr 02, 2011 4:13 am

Filmmaker wrote:Well, how about people who restenose, and people who get worse from the liberation procedures? Is that the hope you want to give them?... MS being congenital, maybe even genetical? Is that the hope you are looking for?... Once you are progressive there is nothing liberation can do for you, is that what you call hope?...
I agree with the fact that we concentrate on correcting the stenoses while we don't even know their cause, how can you correct a problem if we have no idea what it comes from?
Let's ask a simple question: what are the plaques?!!! What are these organic things deposited on the brain and called lesions?!!! have we identified what it is?
Well if we haven't I can tell you the answer: collagen!!! It's the collagen of our brain... just like collagen is "eaten" in RA (rheumatoid arthritis) for example, in our case it's not the collagen of our bones but our brain.... What happens when a tissue looses its collagen? It becomes more and more liquid (our body is about 70% water and 30% collagen -proteins... Have we identified stenoses in RA patients too? Do we know how collagen deposits are created by/from vein stenoses?! it's just obvious that this theory of CCSVI is only a minimal part of the whole problem, and helping the venous drainage is still not recreating our brain collagen... So please, help the research but identifying the real issue.

The Lyme spirochete loves connective tissue (ie: collagen), and often affects one side of the body "preferentially". I know, I know... one of the first tests we get is for Lyme, along with syphilis, brain tumours, etc. But the Lyme spirochete has a cycle, and if one is not tested at the right time in that cycle, the bacterium is missed. The Lyme spirochete is able to "cloak" itself in macrophages and other cells, and only pokes its head out in its cycle.

I am on an anti-biotic protocol that includes minocycline. I cannot say if it is the change in season (affects me), but I am feeling better 6 months in. Interestingly, in 2007, Dr. Luanna Metz of Calgary did a study with minocycline and found an 84% reduction in lesions in subjects who took only mino, and 63% (or less) in those also taking DMDs. The study ended, and they were going to continue it out to 30 months, but it seems to have faded away. Maybe the DMD sponsors did not like the results. I read recently that Dr. Metz has been funded some 4.5 million$ (MSSC) to do a study with mino and CIS. I don't know what happened to the "MS" study.

Sorry to not provide links, but it's late, and I am fogged. A lot of ideas com from http://www.bacteriality.com. That is a good starting point for the curious. Other than that, you have to get inside my head. Don't worry - there is lots of room with my shrunken parynchema.
My name is not really Johnson. MSed up since 1993
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