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I have been dx'd with PPMS. My spine is looked at alot due to my major issue appears to be in my spine which I have heard is not unusual in PPMS. My spine doesn't have lesions but degeneration per my MS specialist.
Robbin's neuro at OHSU has done MRI's of the brain, c-spine, and the rest of the spine twice since FEB '08. On it you could see the old original lesions plus several new ones that were lighting up. On the spine he seems to have 3 lesions and that seemed to be the most disturbing part to the neuro.
What I'm getting out of reading this thread is the spinal ones are the worst and the drugs out there are only talking about slowing or stopping brain lesions..... is that right?
Is there anything out there talking about helping spinal lesions?
Also - thanks Harry - your post and this thread very interesting reading! _________________ partner diagnosed Feb '08
Started on Copaxone switched to Betaseron,
supplements (working on diet!)
Joined: May 26, 2004 Posts: 1356 Location: London, ON, Canada
Posted: Sat Jul 19, 2008 8:39 am Post subject:
Quote:
What I'm getting out of reading this thread is the spinal ones are the worst and the drugs out there are only talking about slowing or stopping brain lesions..... is that right?
From talking to my wife's neuro about the severe damage found in her spinal column during the autopsy, it is apparent that this kind of damage is often present in MS patients, especially those who have had the disease for a long time. What surprised me a bit was an abstract he sent me stating that although this damage was prevalent in MS patients, the scientists didn't know the mechanism behind it.
Now add the fact that MS drug trials almost exclusively take their results from brain MRIs. If the severe damage is happening in the spine and nobody knows the mechanism behind it, just where are we in understanding MS??!! Marg had MS for 36 years and never once did she have an MRI of her spine. Why do I have the sinking feeling that we aren't much further ahead than we were 10 years ago??!!
My spine is lesion free but I have no idea if it is atrophied. I need to ask about this because I am deteriorating with no new or enhancing or otherwise worse lesions and no atrophy in the brain. We are just getting a set of spinal films on me now the third set in 17 years of MS. I've never had a spinal lesion to date, the last spine MRI was in '03
Man an MRI of the spine takes forever I had spasms so bad I had to be sent home cause I blurred up every shot with movement I could not help. I go next week in the AM and I will take baclofen to be still during it.
But here's the thing if there are no lesions and no enhancement and significant atrophy, and this atrophy is stronlgy correlated with disability where brain lesions are not, doesn't that clearly show a process that has nothing to do with the immune system?
I have long thought MS is not autoimmune but this just adds to that in my mind....
harry thanks for your sharing, it means a lot and shows your caring nature. I am sorry Marg's path was not easier for you both but I am sure you were her rock through it all, and we've all benefitted by your sharing. you are a great guy and I am happy to hear you are making a new life now.
marie
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Sat Jul 19, 2008 9:41 am Post subject:
mrhodes40 wrote:
But here's the thing if there are no lesions and no enhancement and significant atrophy, and this atrophy is stronlgy correlated with disability where brain lesions are not, doesn't that clearly show a process that has nothing to do with the immune system?
I have long thought MS is not autoimmune but this just adds to that in my mind....
marie
Hi Marie,
Not in the attempt to attempt to discredit your preconceived notions, I'm not sure how lesions or the lack of lesions in the presence of symptoms in one, or some, cases relates to whether or not MS involves the immune system or if MS is autoimmune?
On the other hand, consider comparing the effects of MS to a lifetime of sun exposure/over exposure on your skin. A drastic over exposure in the past and resulting severe burn is a memorable explanation for lasting sensory symptoms in that area, but is it accurate to consider that the absence of scarring is synonymous with absence of damage? That doesn't hold true in any other aspect of life, why should it hold true with MS?
It seems more sensible to believe that lesions (scarring) are lasting evidence of periods of intense injury, but that the absence of lesion isn't proof of lack of damage caused by longer term, less intense damage....especially considering that mri imaging isn't especially discerning.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 26, 2004 Posts: 1356 Location: London, ON, Canada
Posted: Sat Jul 19, 2008 10:09 pm Post subject:
Quote:
Hi Marie,
Not in the attempt to attempt to discredit your preconceived notions, I'm not sure how lesions or the lack of lesions in the presence of symptoms in one, or some, cases relates to whether or not MS involves the immune system or if MS is autoimmune?
Bob,
Marie's opinion can't be proven any more or less than the current opinion by the scientists that MS is an auto-immune disease. You would think that after decades of research, they would at least been able to find some way of proving the auto-immune theory but they simply have not!
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Sat Jul 19, 2008 11:31 pm Post subject:
Hi Harry,
I do have autoimmune leanings but I try to remain open minded enough that I won't find it too painful if I find it necessary to hop on the other side of the fence down the road.
That said, I think even you would have to admit that inertia is on the side of MS being autoimmune......although we both know that popular opinion doesn't constitute conclusive evidence
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 26, 2004 Posts: 1356 Location: London, ON, Canada
Posted: Sun Jul 20, 2008 9:50 am Post subject:
Quote:
That said, I think even you would have to admit that inertia is on the side of MS being autoimmune......although we both know that popular opinion doesn't constitute conclusive evidence
Bob
Hi Bob,
The "inertia" of the auto-immune theory comes from the fact that it started that way decades ago and anything outside of that thought process has been pretty much ignored by the scientists. The drug companies do the vast majority of the research because of the huge costs involved and you can imagine the direction they give to these scientists. That's all one has to do is look at the drugs that have been used on MS over the years and it's no surprise that it's been all immune system altering drugs.....long term use with very high price tags.
Over 70 years ago, the scientists injected a dog's brain with a foreign substance, saw that it affected the myelin and watched as the dog's immune system attacked it, causing further damage in the brain. Thus was born "MS must be an auto-immune disease". Since then that's where all the focus has taken place.
In the late 40's and early 50's. Dr. Hinton Jonez experimented with IV histamine treatment on MS patients and saw about 80% of the patients he treated at his MS clinic, show improvement in their symptoms. The established auto-immune theory docs at the time gave him a very hard time over this work and when Jonez died suddenly in 1952, all this research work stopped and was buried.
I still find it disappointing that after all these years, the scientists have still not been able to prove a theory that has totally controlled their research efforts and direction. Unfortunately,my opinion of it still being a long time away from finding a truly meaningful treatment, still stands.
Joined: May 26, 2004 Posts: 1356 Location: London, ON, Canada
Posted: Sun Jul 20, 2008 10:29 am Post subject:
Hi Rita,
I saw this on a Canadian tv news report. They said that the scientists now had a model to compare what the spine of a MS patient showed. A missing or defective gene could be identified with this comparison, allowing the researchers to zero in on the problem area as opposed to trying to find a needle in a haystack.
They did caution that the benefits would be some years away but at least it was a start.
I am with Harry; the problem is not that MS "is" autoimmune and the trouble with the industry is they simply can't find the actual trigger;
the trouble is that they really do not know what it is and they keep pursuing that one channel with blinders on to anything else.
Bob, I know you have had good access to medical literature so perhaps you have read the Prineas and Barnett paper in which the microglia were still ramified rather than being ameboid (activated) in the presence of a degenerated nerve. I own a copy of that paper and have read the whole thing. It really calls into question the idea that the immune system caused the problem in the beginning.
While you can find Luccinetti questioning the data on the P&B paper, saying that their conclusion that all the autopsy samples they had showed early lesions were of an single type (namely areas where degeneration had already occured and the immune system was not there) could not be accurate based on her research which she says shows 4 clear types of different origin, the fact is that P&B had PICTURES of actual MS brains with degenerated nerves and no immune system activation present shows clearly that there are at least some lesions which are degenerated areas with no immune stuff going on. it is undeniable.
There is data and then there is data. Epidemiolgoical data is weak because cause cannot be discerned by mere associations.
Research that is completely indirect, let's say on EAE, shows us exactly nothing about MS. EAE is self limiting, EAE has different cytokines and immune activation than is known to be present in MS, EAE is curable. I wish I had EAE! It is not MS as much as we would like it to be a good model it just is not a good model of anything but an induced autoimmune disease created by researchers.
Pathology like the work Luccinetti does and P&B did is the most credible stuff we have. It is on actual MS brains and shows direct evidence of what is happening at the site of the lesion. That's why the P&B paper was so incredible. It calls into question the whole idea of autoimmunity.
Research by pharma is always motivated by what they assume will pay off later. They continually look for innovative ways to zap the immune system because they know they can get the lesions to look better on MRI by doing that and thus can make a case to get their drug approved; it's sure fire.
The sad fact is that over time these approaches do not result in stopped progression, some of them hardly even slow progression.
Marg's lack of MRI enhancing brain lesions and marked funcitonal disability coupled by direct evidence of severe atrophy in the spinal column is really interesting. Considering the idea that lesions as documented by P&B clearly had degeneration without immune system activation, is it such a leap to say that eventually the immune system maybe possibly stops reacting to such degeneration? The immune system's prime directive of "do no harm to self" kicks in and the degeneration goes unanswered by inflammation?
Thus, perhaps, the SPMS stage is engendered.
SPeculative of course, but a person with MS who has seen years and years of one kind of immune system "hit" followed by another and have seen approach after approach turn out to be only marginally effective I am quite disenchanted by the autoimmune theory. Like you though, Bob, I am not exactly so sure of my own ideas that I would bet my life on it nor would I like to say it "must" be right. There certainly are enough people still hitting the autoimmune drum to hear the beat.
I find the revimmune idea interesting because it is a one time hit to supposedly "reboot" followed by allowing the body normal immunity.
It is the first immune hampering idea that has appealed to me for that reason I think I can have my cake and eat it to maybe.
marie
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Sun Jul 20, 2008 11:35 am Post subject:
Hi Marie,
I've read Prineas and Barnett's work and in fact I've purposely have tried to read everything which makes MS seem NOT autoimmune because more than proving anything or anyone correct, I would like to know what the correct answers are.
The problem is that there has never been anything conclusive pointing either way, yet there is seemingly valid information pointing both ways. In the end, my leanings towards "autoimmune" hinge on:
1) My being interested in autoimmunes LONG before my wife was diagnosed with MS and so that was my mindset upon entering the MS picture
2) Although the majority aren't always right, the best odds are usually with the majority, and the vast majority are of the autoimmune inclination.
3) Not conclusive evidence until more time goes by but it "seems" that "proof is in the pudding" in regards to the results being shown by Campath, Revimmune and Tovaxin, all of which specifically act on aspects of the immune system.
Among researchers this autoimmune/non-autoimmune argument is much less of an issue than it is for us laymen who seem to use the issue as a reason that research hasn't progressed more.
At this point I can't see that conclusive knowledge of whether or not MS is autoimmune would offer much advantage, over and above my being able to tell Harry "I told you so!"
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Last edited by Lyon on Sun Jul 20, 2008 11:54 am; edited 1 time in total
Joined: May 26, 2004 Posts: 1356 Location: London, ON, Canada
Posted: Sun Jul 20, 2008 11:51 am Post subject:
Marie,
In the number of years that I have been on ThisIsMs, I don't think that I have read a message as well written and concise as the one that you just posted. You certainly do have a talent at expressing your ideas and I tip my hat to the quality of such writing skills.
Joined: May 26, 2004 Posts: 1356 Location: London, ON, Canada
Posted: Sun Jul 20, 2008 12:17 pm Post subject:
Quote:
Although the majority aren't always right, the best odds are usually with the majority, and the vast majority are of the autoimmune inclination.
"The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd; indeed in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible."
Bertrand Russell
Hi Bob,
I think good ole Mr. Russell said a lot in his comment and I have applied that to typical MS research over the years.
Quote:
At this point I can't see that conclusive knowledge of whether or not MS is autoimmune would offer much advantage, over and above my being able to tell Harry "I told you so!"
I'm afraid you would have to get into a long line of people who are waiting to say the same thing to me But I've had this view for many years and the way that things are going, I'm not sure that anyone will ever be able to say that! If, however, it meant a cure or decent treatment came out of the established theory, I would gladly eat several helpings of crow pie
Posted: Sun Jul 20, 2008 12:20 pm Post subject: 9-pound hammers!
Lyon, you wrote:
Quote:
Campath, Revimmune and Tovaxin, all of which specifically act on aspects of the immune system.
My questions (which no scientist can answer) are "What else do these 9-pound hammers act on? The pancreas perhaps??? What other inadvertent damage might they be doing?
Let the scientists find the CAUSE of MS; then they will know the target to go after!!!
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But I've had this view for many years and the way that things are going, I'm not sure that anyone will ever be able to say that! If, however, it meant a cure or decent treatment came out of the established theory, I would gladly eat several helpings of crow pie 