Postpolio/ MS similarity
Posted: Fri Jul 25, 2008 7:31 am
BACKGROUND
Hi everyone!
I have had MRI's of my brain and spinal cord this spring in preparation for investigating revimmune as a possibility.
I have had a progressive seeming course since spring of '03 (after 12 years of MS before that with a benign course-I have been on Cop since it came out) and at that time I was essentially a 1 or a 2 and I am now on a cane full time.
In '03 I started LDN-- no effect. MR showed slight progression in lesions size. In '05 I started antibiotics which helped with a bunch of symptoms but have not stopped progression (see my regimens log if interested).
My current MRI of my brain is clean, no enhancement no new lesions or expansion of old lesions, no inflammaation, no atrophy nothing. It is unchanged since beginning abx 3 years ago which was the last MRI.
We did a spine MRI set to see if something is going on there to account for the progression, the cervical spine is fine no enhancement no lesions. I have no report yet for the thoracic spine.
THE POINT
In conversation with my doctor yesterday he told me that SPMS is marked by stable appearing MRI's with no new lesions and enhancement but ongoing progression. He told me something I had not heard before: namely that probably MS burns itself out and gets done doing its damage, but the brain continues to deteriorate in the same fashion it does in "post polio syndrome".
For those not familiar with post polio, polio is a virus that attacks people and in a rare person, about 5%, they actually get sicker than the usual "it's a cold" experience and instead get a neurological issue. 2% will have paralysis. The virus goes away and people recover to a greater or lesser degree based on how much damage was done in the active phase.
(isn't it curious that so few get the paralysis when the germ was so common before vaccine? WHy 5% and not all people? Why those specific people? Like MS, twins did not usually both get paralysis so it is not necessarily genetics.........)
People who seemingly recovered very well or even completely in that rare group that actually had some level of paralysis are finding decades later that they are progressively losing ground and function.
This syndrome is not a reactivation of the virus, but is instead deterioration of the 'alternative nerve pathways' the body created in the aftermath of the disease; thus when a nerve was killed by the virus when it was active, a nearby nerve took over the job of the dead nerve, this made that nearby nerve thicker and longer to do the extra work, but eventually the extra effort and oxidative injury from the additional work load takes it's toll and it too dies.
SO my neuro's belief is that the SPMS stage is a similar mechanism in the MS brain.
He essentially said there are no treatment strategies to help this stage of MS. Reducing inflammation will not help because inflammation is not causing any problems now, the problems are something else entirely. IT is degenerative and not inflammatory at this point. So he believes.
I recognize the idea of SPMS being non-inflammatory and have heard of course of the idea that it is a secondary neuro degenerative disease where RRMS is the "real" inflammatory disorder, but I had not heard the idea that the process we call "MS" is over or that it is an entirely different mechanism for the loss of fiunction in other nerves altogether.
This seems a more sinister theory: he is saying essentially that not only have MS nerves been lost, but neuroplasticity has been exhausted and is collapsing too.
Anyway has anyone else heard this post polio like theory and what implications might it have?
If he is right, then SPMS is a completely different disease and the idea that any strategy that help RRMS could help SPMS is completely impossible. Forget about revimmune or any other thing helping SPMS; they will not.
OTOH I suspect he is wrong for these reasons
1. There is degeneration from the beginning, it is not some late stage development; it is part of the disease.
2. Post polio nerve pathways usually work for decades, SPMS is usually much quicker than that.
This suggests to me that the MS process is still there and going on, perhaps the inflammation has "burned out" but not MS. If this is correct then strategies that help RRMS might help SPMS to the degree that it impacts the degenerative component (I am in the "MS is degenerative" camp). Some of our current strategies are neuroprotective; copaxone is neuroprotective (stimulates BDNF), so is minocycline.
Any thoughts?
Hi everyone!
I have had MRI's of my brain and spinal cord this spring in preparation for investigating revimmune as a possibility.
I have had a progressive seeming course since spring of '03 (after 12 years of MS before that with a benign course-I have been on Cop since it came out) and at that time I was essentially a 1 or a 2 and I am now on a cane full time.
In '03 I started LDN-- no effect. MR showed slight progression in lesions size. In '05 I started antibiotics which helped with a bunch of symptoms but have not stopped progression (see my regimens log if interested).
My current MRI of my brain is clean, no enhancement no new lesions or expansion of old lesions, no inflammaation, no atrophy nothing. It is unchanged since beginning abx 3 years ago which was the last MRI.
We did a spine MRI set to see if something is going on there to account for the progression, the cervical spine is fine no enhancement no lesions. I have no report yet for the thoracic spine.
THE POINT
In conversation with my doctor yesterday he told me that SPMS is marked by stable appearing MRI's with no new lesions and enhancement but ongoing progression. He told me something I had not heard before: namely that probably MS burns itself out and gets done doing its damage, but the brain continues to deteriorate in the same fashion it does in "post polio syndrome".
For those not familiar with post polio, polio is a virus that attacks people and in a rare person, about 5%, they actually get sicker than the usual "it's a cold" experience and instead get a neurological issue. 2% will have paralysis. The virus goes away and people recover to a greater or lesser degree based on how much damage was done in the active phase.
(isn't it curious that so few get the paralysis when the germ was so common before vaccine? WHy 5% and not all people? Why those specific people? Like MS, twins did not usually both get paralysis so it is not necessarily genetics.........)
People who seemingly recovered very well or even completely in that rare group that actually had some level of paralysis are finding decades later that they are progressively losing ground and function.
This syndrome is not a reactivation of the virus, but is instead deterioration of the 'alternative nerve pathways' the body created in the aftermath of the disease; thus when a nerve was killed by the virus when it was active, a nearby nerve took over the job of the dead nerve, this made that nearby nerve thicker and longer to do the extra work, but eventually the extra effort and oxidative injury from the additional work load takes it's toll and it too dies.
SO my neuro's belief is that the SPMS stage is a similar mechanism in the MS brain.
He essentially said there are no treatment strategies to help this stage of MS. Reducing inflammation will not help because inflammation is not causing any problems now, the problems are something else entirely. IT is degenerative and not inflammatory at this point. So he believes.
I recognize the idea of SPMS being non-inflammatory and have heard of course of the idea that it is a secondary neuro degenerative disease where RRMS is the "real" inflammatory disorder, but I had not heard the idea that the process we call "MS" is over or that it is an entirely different mechanism for the loss of fiunction in other nerves altogether.
This seems a more sinister theory: he is saying essentially that not only have MS nerves been lost, but neuroplasticity has been exhausted and is collapsing too.
Anyway has anyone else heard this post polio like theory and what implications might it have?
If he is right, then SPMS is a completely different disease and the idea that any strategy that help RRMS could help SPMS is completely impossible. Forget about revimmune or any other thing helping SPMS; they will not.
OTOH I suspect he is wrong for these reasons
1. There is degeneration from the beginning, it is not some late stage development; it is part of the disease.
2. Post polio nerve pathways usually work for decades, SPMS is usually much quicker than that.
This suggests to me that the MS process is still there and going on, perhaps the inflammation has "burned out" but not MS. If this is correct then strategies that help RRMS might help SPMS to the degree that it impacts the degenerative component (I am in the "MS is degenerative" camp). Some of our current strategies are neuroprotective; copaxone is neuroprotective (stimulates BDNF), so is minocycline.
Any thoughts?