Thanks Cure for the encouragement but let me be clear: I am definitely functionally seeing changes, I just do not particularly expect to see changes on my personal MRI. Maybe I will update regimens. I honestly have less time for the internet than I used to
I have had no inflammation or enhancing lesions for years. The theories now offered about why that is in SPMS do not take the possibility of CCSVI into account and I am thinking they will have to go back to the drawing board to figure out what is going on there if this becomes an accepted model for MS causation.
I will say that MS lesions become an actual scar that can be FELT in the brain on autopsy. It is a physically hard area around the vein. I suspect that what would happen in CCSVi after time is that the area is so scarred and hard it is no longer an area that can let inflammation in because there would be no delicate brain tissue left to be hurt by the CCSVI, no fragile nerves or oligo's dying and sending out cytokine signals for immune support and cleanup, only hard scar tissue, and this would result in a permanent scar on MRI that just never enhances any more. That's my personal idea about what that might be.
who have clinically improved with Revimmune have sometimes seen old lesions shrink or disappear.
I tried to go to JH for Revimmune when it was a hot topic here spring of '08. Dr Kerr, a lovely man I will add, said it would not help me after reviewing my material. In their first study they had half the participants do poorly after treatment and those people were all the ones with no active inflammation ahead of time, like me. They had decided then to take ONLY people with active inflammation.
The thing about that is that lesions naturally come and go in people with RRMS and active inflammation see
go to the section on diagnosis and see monthly serial MRI's. This patient had several lesions appear and disappear over the course of a year.
Chris, who responded to revimmune had a lesion disappear after treatment---as well as a new one that appeared. He said they offered the explanation that the immune system "popped off" one last lesion as Chris described it. But what if CCSVI is the cause of MS? might it be that his immune system was suppressed enough that the one lesion healed, but as the supposed stenosis was still there, new damage occurred and his immune system simply responded by activating and cleaning up the damage?
So to get all basic physiology on you, inflammation is caused by an active immune system and enhancing lesions are a sign that the BBB is open and immunity is actively crossing into that area. When you do a treatment like Revimmune the body's ability to respond to damage like that is hampered.
And here is the million dollar point: A large part of the damage in MS, IS caused by the immune system going in to try to clean up the injured cells EVEN IF the cells were injured by CCSVI.
there doesn't HAVE to be auto
immunity for the immune system to still be a culprit in this story.
so revimmune can impact the lesions even if MS were caused by CCSVI.
Here's why I say that:
1. In legs, where people can have stasis ulcers, they know a sizeable portion of the damage is caused by the immune system trying to repair the injury. In SOME cases, Dr Simka told me when I asked, they do use anti inflammatory measures to reduce this, such as steroids. So only part of the damage is from the venous insufficiency, a portion of it is the immune system responding.
2. In stroke, a type of damage not the same as CCSVI but still with some similar factors (like ischemic damage), they can improve out comes by giving a immune suppressant temporarily in the acute phase because the immune system trying to clean up the stroke causes new damage of its own that worsens the damage to the brain tissue.
3. In spinal cord injury it is known that the SCI can be reduced by using steroids or something of that nature to stop the immune system from overdoing it and causing damage in the acute phase after the accident.
Therefore it is not surprising that people who have MS that still is inflammatory have lesions that come and go and it is not surprising that people who have had their immune system suppressed show less immune activity. Since we know that lesions have no correlation with disability our fascination with them may be misguided...or it may be that the best treatment will include an anti inflammatory element. No one can rule that out at this point.
All that having been said, if CCSVI is the cause of MS eventually it should be clear that at the minimum no new lesions appear if treatment of the stenosis is enough to stop MS.
And as another angle to this even treatments that do show some lesion reduction do not remove all lesions, therefore some lesions are new enough to be impacted others are apparently not.
To me it seems that the SPMS person is the likely person to have no lesions that CAN go away. It'd be nice if I was wrong, so if anyone has anything to offer that they think supports the idea that lesions should go away, I would be pleased to hear that.
I'm just trying to be realistic in my expectations
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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