Some news

[costumenastional]

Costumenastional:

There is another possibility. From the Buffalo results and anecdotal results reported here, it would seem that these stenoses are indeed seen more often in people with MS, i.e. they are associated with having MS. Assuming this true, it is possible that the stenoses are a result of having MS, or some inflammatory process associated with the MS.

This is a re-post. I would like to get your opinion.

Sorry for the delay patient. I am really happy that some of us are discussing what i asked in the first place. For all others...i ll just say what i usually say: i dont give a fuck. They are just turning a conversation to shit. I am used to it.

So, i ve read Cheer's answer to this and i couldn't have said it better.
Thank you very much for this Cheer. You are a blessing in disguise.

They have already categorized CCSVI as a congenital disorder and i dont have a reason to not believe it. BUT: i ve seen with my own eyes captions with veins in a very bad shape. Mine for instance are a mess. Comparing them to the other guy's jugulars (i was in there with the doctor all the time) was like comparing a pipe with a straw.
Same goes for my azy. Comparing to normal azygous veins it sucked. And while angio helped it didn't make my veins perfect.

So, what's wrong? Was i born like that? Why it took 33 years for this to be a real problem?
Or MS is responsible for my jugular and azygous malformations? Why only these veins then? Why not everywherel inside my vascular system?

I dont have a clear opinion for this matter, sorry. I can only suspect that vein malformations origin may vary from person to person. When we see a person missing a jug it s congenital for sure. When we see a vertebral plexus which look like a net that sharks chewed on, i am not sure there is not some kind of virus involved. Looking at my poor veins and then looking the other dude's veins was a real shock for me. It was like scanning different species. And i really think that all the collaterals we could see next to my veins should not be there.

But my question was about something else that wasnt addressed by anyone: why that person had brain MS lesions? He didnt have CCSVI, trust me.

Maybe he developed MS that wont give him serious problems because CCSVI wont make it worse. I have MS and CCSVI and i am clearly in a worse shape than he is.

There is a connection. But i dont think CCSVI will make MS vanish from our system. I just happen to know that everyone with CCSVI should be fixed pronto and give their body a chance.

From prof Grozdinski (translated by a bulgarian patient of his as they sent it to me):
in all cases with disorders in blood flow due to narrowing of the veins is with a negative impact on brain and his personal opinion is that there is a sense of angioplasty even if it does not reduce or disappearance of MS symptoms . He also said that that MS is the result of two factors . First is associated with blood-brain barrier and normalization of blood flow and second , that is associated with autoimmune nature of the disease . Depending on which of the two factors leads is faster and more significant or slow and imperceptible improvement . But there is improvement .

[eric593]

Costume,

There are many causes of CNS demyelination. That's why the MS differential dx is so extensive.

Unless you want to suggest EVERYTHING in the differential dx stems from CCSVI and therefore ALL lesions are caused by this new iron theory of demyelination, then I would not be surprised that someone could have a dx of MS and not have vein malformations. The MS dx is one of exclusion and it's very possible that someone can have MS-like lesions caused by something other than reflux.

[sbr487]

Costume,

There are many causes of CNS demyelination. That's why the MS differential dx is so extensive.

Unless you want to suggest EVERYTHING in the differential dx stems from CCSVI and therefore ALL lesions are caused by this new iron theory of demyelination, then I would not be surprised that someone could have a dx of MS and not have vein malformations. The MS dx is one of exclusion and it's very possible that someone can have MS-like lesions caused by something other than reflux.

That's true ... I read about couple of other diseases that cause brain lesions (not heard of any other disease causing spine lesion). Not able to recall the name but has something to do with malformed circulation system in the brain (which would be much more aggressive than having vein issue) ....

[marcstck]

Costume, I think the mistake you're making is assuming that MS and CCSVI are invariably one and the same disease. MS is extremely heterogeneous, meaning it presents differently in different people, and the diagnostic measures used to assess it also vary widely from patient to patient.

What we have come to call "multiple sclerosis" is most likely a collection of different conditions that share common symptoms and diagnostic signs. MS is thus probably more a syndrome than a singular disease.

I've no doubt that a portion of the MS population can trace the genesis of their disease to vascular issues. I've also no doubt that a portion of the MS population suffers from a disease that has nothing at all to do with vascular system problems. What the proportions of these populations are is currently unknown, and hopefully we will start getting answers to these questions from some of the research projects that have recently commenced.

Remember, too, that a significant number of people diagnosed with MS are actually misdiagnosed, and suffer from other known conditions. Based on years and years of experience doing research on MS patients, my doctors at the National Institutes of Health have told me that 10-15% of those told they have MS actually suffer from some different illness (as they think I do). My involvement with the NIH began by my taking part in a study being done in an attempt to identify patients that they were confident actually had MS for use in future studies, because the volume of misdiagnosed patients that had been included in many of their previous studies had polluted their research results.

The point is, the fact that your veins are fouled and the other fellows' were not does not mean that one of you does not suffer from MS. The study of CCSVI will likely lead to a redefinition of what we currently call MS, and hopefully will lead to a further unraveling of the causes associated with non-CCSVI related "multiple sclerosis", even as it clarifies the role of the venous insufficiencies in the MS disease pathogenesis of some patients.

[costumenastional]

True Marc.

This is what makes the whole situation frustrating to say the least.
Some of us (myself included) thought that Zamboni found the one and only triggering mechanism for MS. All i am trying to do is to put in elegant words that this is not the case.
But even if it is, many of us will result with a different diagnosis in the ( hopefully not so distant) future. And this is not too good if you ask me.

My great hope was that only reflux and chaotic flow caused by CCSVI would be capable to result in the BBB breach. It makes sense. It doesn't seem to be like that. Immune cells penetrate their way into the CNS for other reasons too.
Seeing a brain full of lesions not caused by CCSVI left me wondering. I just feel that more research is needed NOW. And CCSVI is just one place to start from.

[malden]

...My great hope was that only reflux and chaotic flow caused by CCSVI would be capable to result in the BBB breach. It makes sense. It doesn't seem to be like that. Immune cells penetrate their way into the CNS for other reasons too...

Welcome to the Dark side. M.

[costumenastional]

Welcome to the Dark side. M.

Realizing that what one is suffering from is complicated is one thing my dear Malden.
Destroying a conversation is another.

I really don't think that i am on your side. Sorry. We are both sick. But it is obvious that our similarities stop just there. Be careful over there, in the dark side...

[malden]

...We are both sick. But it is obvious that our similarities stop just there...

Yes, you are right... we are both sick. But you are Liberated, and I am not. It is obvious that our similarities stop just there.

Just to remind you what you wrote in MY thread:
http://www.thisisms.com/ftopicp-110257.html#110257

...Sorry for highjacking a "scientific" thread while i am not a scientist. But then again, i wouldnt have a clue even if i was a scientist....

...One more thing for all those who believe that having blocked veins is normal. During balloon dilation the pain was terrible. But you know what???
I loved it cause when i felt the pain, i remembered that i had small pains in the same places for years. I just didnt know why.
Can one feel the vein blockage? Yes, he can. Is it normal to feel any kind of pain when everything is good? I dont think so.

The risks involved are MINIMAL. Only thing i cared during the operation was for the surgeon to find something to fix. And he did. As i have said 1000000000 times, everyone should stop talking and do it. Who knows? Maybe something good will happen.

With all respect, i dont think i should trust someone who won the Nobel back in the 20s. Like i dont trust Putnam's research.

There is a link between CCSVI and MS. This is a fact. Will liberation stop MS? uuummm well, is there anything out there that does?

Open your veins people. Dont trust anyone who says the opposite.

...that's perfect example on how consistent you are.

M.

[costumenastional]

And your point is...

[sbr487]

My great hope was that only reflux and chaotic flow caused by CCSVI would be capable to result in the BBB breach. It makes sense. It doesn't seem to be like that. Immune cells penetrate their way into the CNS for other reasons too.

Costume, one point I would like to make - a lesion in the brain and regular venous obstruction does not rule out BBB compromise. It is possible that one might have lesions and healthy veins and compromised BBB, unless the lesions are caused by some local factors. I think in most of the cases, it would still be immune activity that is causing the lesions and for that to happen (in my view), the BBB has to let your immune cells through ...

[costumenastional]

Costume, one point I would like to make - a lesion in the brain and regular venous obstruction does not rule out BBB compromise. It is possible that one might have lesions and healthy veins and compromised BBB, unless the lesions are caused by some local factors. I think in most of the cases, it would still be immune activity that is causing the lesions and for that to happen (in my view), the BBB has to let your immune cells through ...

I know... i am just sorry that CCSVI is not the only reason for demyelination inside the CNS. Hopefully it will turn out to be the only reason for CNS degeneration and all those "global" brain symptoms. MS speaking that is.
What a mess we are dealing with here...

[shye]

Our blood carrries not just the oxygen and iron so much discussed with MS, but all nutrients that nourish cells. if you are deficient in any of the nutrients specific to myelin formation--such as copper, vitamin B1, vitamin B6, choline, inositol, etc, I would think demyelinization could occur--with our without CCSVI.
And, likewise, with these or other deficiencies, I would think CCSVI might occur due to malformations of vein structure.

[Cece]

I know I'd rather be the guy with the messed-up jugs (that can hopefully be fixed with angio and stenting) than the guy with perfect jugs and no explanation. (Or was his a follow-up visit too? Could he have had a vein problem fixed the first time and fixed well enough that no collaterals were seen any more? Nope...reread, it was his first visit BUT his azygous was not scanned. If he has a problem in just his azygous, that could be enough to cause mild MS? He would be lacking the two signs as Zamboni required, so it wouldn't even be enough to be diagnosed as CCSVI...but it could still be bad enough to give mild MS symptoms?)

It just seems that the docs in clinical settings are finding so much CCSVI! Near to 100%.

Thank you for sharing all this, it is food for thought. I am getting so used to the sorts of images we see around here, that normal jugs on a person would be a shock.

[THEGREEKFROMTHED]

Leave it to the Greek! This has been a very exciting and entertaining thread Costume my brother!

Here is another monkey wrench for you.

My MS has presented in my spine mostly (c and T) Venogram confirmed jugular vein stenosis of greater than 75% bilaterally. Azygos issues seemed to stem froma malformed valve.

SO...BOTH IJV's are less that 25% open yet all my lesions are in the spine with the exception of a few microscopic ones in the brain possibly even from childhood migraines....What gives????

[marcstck]

It just seems that the docs in clinical settings are finding so much CCSVI! Near to 100%.

Thank you for sharing all this, it is food for thought. I am getting so used to the sorts of images we see around here, that normal jugs on a person would be a shock.

That 100% figure is more of a red flag than something to take comfort in. As I stated in my previous post, based on their experiences with thousands of supposed MS patients, the NIH estimates that 10-15% those diagnosed with MS actually suffer from some other illness. This means that given a reasonably sizable patient pool, even if CCSVI was THE singular cause of MS, we should only be finding it in 85-90% of people undergoing catheter venograms. Given that CCSVI is most likely not THE one and only cause of MS, a more believable figure would be much lower, somewhere in the neighborhood of the 60-65% found in the initial buffalo imaging study.

The differential diagnoses for MS number at least 100 other illnesses, including Lyme disease, neuro mellitus optica, hereditary spastic paresis, tropical spastic paresis, sarcoidosis, CNS related lupus, arterial vasculitis, adrenomyeloneuropathy, and a long list of others. All of them can cause demyelinating lesions in the brain and spinal cord, as well as suspicious findings in the CSF.

Zamboni's initial findings of 100% CCSVI in MS patients simply don't jibe with the known etiology and the prevalence of misdiagnosis in MS patients.

Lest I get pilloried, I am on record as a CCSVI supporter, and have undergone an attempted liberation procedure (unfortunately, unsuccessfully) myself. But I refuse to allow the hurricane of emotion that has become such a large part of the CCSVI argument to color a rational assessment of the facts at hand.

MS is a very complicated disease. Unfortunately, I don't think there is a single magic bullet that will slay this beast. That said, CCSVI may very well be a magic bullet for a substantial portion of those suffering from what we now call multiple sclerosis, a definition that will likely be forced to change sometime in the not-too-distant future.