QUESTION:CCSVI and CSF ???????

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

QUESTION:CCSVI and CSF ???????

Postby costumenastional » Thu Jan 28, 2010 5:40 am

From day number one (since i first heard about ccsvi that is) i am wondering: what about oligoclonal bands and proteins inside the CNS of the liberated patients?
CCSVI is supposed (and it makes sense to me) to be the cause of the BBB breach. After liberation shouldn't the spinal tap be giving normal or at least better results?
After all, isn't this the reason for one to be liberated?
As hard as i am trying to find case reports on that matter i couldn't find something solid...
Of course i dont have access to official medical data but i cant stop wondering if Zamboni has found such evidence, wouldn't it be the most solid proof? He has been liberating people (including his own wife) for the last three years!!!!! He should know by now. What do they talk about in the conferences???
I am no doctor but once one gets his veins unblocked having a spinal tap would be the better way to find out what s going on instead of waiting for symptoms to get better...
CSF doesn't always show pathological evidence, in fact in PPMS this is often the case. But still...
I find it very weird that this has not caught our attention so far. And please forgive me if it had and i missed it.

I am searching the best way i can. I am only a patient after all. Anyone out there wanna share his/her opinion-knowledge?
We are trying so hard to make this mainstream and widely accepted but some things could make it so much easier. The way i see it someone with no more pathological evidence in his CSF fluid is allow me to say cured. If bands are still present even after months or years then it didn't work. Sounds plain and foolish but this is what i believe.
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Postby Perky » Thu Jan 28, 2010 6:47 am

Well, I'm no expert, but the way I see it is the oligoclonal bands signify an abnormal immune system response. CCSVI theory is that the body's immune system is responding to the iron deposits in the brain which are a result of the reflux of deoxygenated blood. After CCSVI treatment the immune system would still continue to respond abnormally as the iron deposits would still be in the brain. The CCSVI treatment could only prevent further iron deposits - the next step would be to remove the iron that has already built up. Maybe when the blood flow from the brain is sorted and the brain has the right supply of oxygen, the body can start to rid itself of those iron deposits?
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Postby costumenastional » Thu Jan 28, 2010 7:09 am

The way i see it,
The point is that the immune system should not be able to get across the BBB and continue attacking thus the iron or whatever other toxic wastes should be carried away following the normal flow.
If it continues to do so (attack) there is no apparent effect.
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Postby Cece » Thu Jan 28, 2010 8:39 am

My understanding is that the CSF testing may show oligoclonal bands that result from a recent MS attack or one from five years ago. It does not clean out on a regular basis and so would not be a good indicator of improvement. Someone correct me if I'm wrong about this, I do not want to spread misinformation!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby foreignlesion » Thu Jan 28, 2010 8:48 am

I have a related question to this.

I had three different doctors tell me about six months ago that there was no way I had CCSVI because I had a normal lumbar puncture.

I think they were just dismissing my questioning, and since the recent explosion I began exploring avenues for testing and treatment once again.

I have not seen anything in the research relating to a correlation between CSF and CCSVI, but does what they said have merit?
Last edited by foreignlesion on Thu Jan 28, 2010 9:15 am, edited 1 time in total.
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Postby ErikaSlovakia » Thu Jan 28, 2010 9:13 am

foreignlesion wrote:I have a related question to this.

I had three different doctors tell me about three months ago that there was no way I had CCSVI because I had a normal lumbar puncture.

I think they were just dismissing my questioning, and since the recent explosion I began exploring avenues for testing and treatment once again.

I have not seen anything in the research relating to a correlation between CSF and CCSVI, but does what they said have merit?

My LP was normal as well done in 2008.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby foreignlesion » Thu Jan 28, 2010 9:19 am

Thanks Erika, That answers my question very well. I thought they were just dismissing me and I was right. I seem to be talking to the right people now, or at least people are now listening.
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Postby Cece » Thu Jan 28, 2010 10:03 am

The oligoclonal bands on lumbar punctures are indicative of M.S. but related only secondarily to CCSVI (the idea being that the back-up due to obstructions causes a breach of the BBB which leads to the M.S. lesions and related immune activity that shows up in the CSF). So, yeah, sounds like a blow-off, unless they're also saying you don't have M.S., which would also not be necessarily true. (I had normal CSF results but am diagnosed M.S.)
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Postby jr5646 » Thu Jan 28, 2010 12:12 pm

I have also had neg. LP's... Two of them to be exact and they both sucked very much, might I add. I was still given steroids and my DX was still MS. It was my understanding tho that you will only see oligoclonal bands IF you have active inflammation?? Now what amazes me is that we can have lesions and the tests don't reflect it.. But the MRI's clearly show them... so why bother with them anyway??

As far as BBB breach goes, I believe ccsvi creates the actual breach to begin with. I thought immune cells freely passed between the CNS and the rest of the body anyway? Tysabri's mechanism is by adhesion molecules.. The drug attaches itself to so called "rouge" immune cells.. This attachment now makes them too large to pass accross the bbb. So, if the increased iron / oxygen depleted blood wasn't there in the first place, the immune response would not have occurred? Right?

Here is the $50k question though... Open up, the blockage (relieve the pressure which causes the breach).. Eliminate the reason for the immune response... Now how do we get out the iron that has already crossed... reverse CNS reflux???



http://en.wikipedia.org/wiki/Blood-brain_barrier
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