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

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Postby robbie » Thu Jul 23, 2009 6:50 am

When someone has a bad relapse and then makes an almost total recovery and this recovery lasts for years and years how is this related to ccsvi,
Had ms for over 19 years now.
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Postby questor » Thu Jul 23, 2009 9:59 am

I'm very new to this, and am still digesting what I've read (and the stack of what I haven't yet read is quickly growing), but, the way I've been thinking about this is that CCSVI is a condition that appears to be treatable and that is strongly associated with MS, but is not necessarily the same thing as MS, and the relationship between MS and CCSVI is still unclear (as in cause and effect).

So, I'm not sure it makes sense to me (at least at this point) to explain the incredible variety of all things MS in terms CCSVI. The immune system is incredibly complex (as is the CNS and the human body), and I would almost expect that the eventual cause(s) of MS (if ever completely understood) may end up being a mix of several things in a chain of events that interoperate: genetic factors, autoimmune, environment, CCSVI, IgG food sensitivities, IgE antibodies in response to external agents, etc, etc, and that more than one combination of these causative factors can combine to form the condition that is currently called MS.
Last edited by questor on Sat Jul 25, 2009 3:47 pm, edited 4 times in total.
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Postby Rokkit » Thu Jul 23, 2009 10:02 am

I don't think anyone knows yet, but here's one possibility: the autoimmune response to CCSVI is responsible for the symptoms in a relapse. Once the response abates, so do the symptoms. But the underlying CCSVI is still ongoing.

Why would the AI response abate if CCSVI is still there? In another thread, CCSVI was characterised as potentially being the initiator of an "ischemic cascade." So the AI response could be addressing an intermediate issue created by the CCSVI. Then the immune system goes back to sleep until CCSVI damage reaches another critical mass.

Do I have a clue what I'm talking about? No, but I think it's a possible explanation.

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Postby cheerleader » Thu Jul 23, 2009 10:04 am

Discussion on relapses in the CCSVI paradigm:
http://www.thisisms.com/ftopict-7240.html

Posted: Sat May 16, 2009 12:49 am Post subject: How to Understand Remission in CCSVI
One issue that people and doctors have alluded to in the CCSVI discussion as a proof that MS cannot be vascular , is the relapsing/remitting nature of MS. How can we understand exacerbations, flares and remission within this paradigm?

I wanted to start a thread to try and ferret out some research to understand this facet of MS.

This first post is just some rambling thoughts...but we'll get the science going.

One thing that I keep coming back to is the unique and personal pattern every MS patient has- people connect different experiences with their diagnosis.... Jimmy remembers being OK until a Hep B vaccine, Jeff was doing OK until a trip to Salt Lake City (high alt) and stress, Lars was fine until a high altitude trek and illness, fill in your own story here....What brought you into the doctor's office, into the MRI tube, and to an MS diagnosis?

I'll bet it was some sort of vasoconstricting event. Something that disrupted the nitric oxide in the blood vessels. Virus, low oxygen, bacterial infection, cortisol, giving birth.

My guess is that every MS patient is born with venous stenosis and that the body is able to work around the area of impaired drainage with some success, until WHAM! There is an event that completely blocks off return of blood to heart at that weak point, and the cycle of perfusion, hypoxia and immune activation is started. A few days/weeks after, the MS patient has what we call an exacerbation.

When the nitric oxide in the blood vessels returns to stasis, the blockage opens up a bit (but with damage done to the CNS, lesion formation, and a thickening of the vein wall due to inflammation) and the MS patient has some "remission." Repeat this over several years, and the MS converts to progressive, when the veins are tougher, less able to open back up, and the damage in the brain and spine has accumulated.

thoughts? Personal stories? Science?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Thu Jul 23, 2009 10:20 am

thanks cheer i see my neuro soon and will show this to her and see what she thinks.
Had ms for over 19 years now.
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