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Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 2:38 pm Post subject:
cheerleader wrote:
Jeff always shows inflammation in his blood tests. Even with no inflammation in his MRI, and no enhancing lesions, his blood shows high levels of inflammation.
Interesting that you happen to post that today AC because earlier in the day I was wondering that very thing and you answered my question very aptly!! (I was wondering if there was a blood test for inflammation markers and what it would show in the absence of inflammation showing on MRI) Thank you! That's the first nail in the "neurodegeneration in the absence of inflammation theory.
robbie wrote:
We are always talking about all these drugs stopping relapses which means that it is stopping inflammation so is it possible that there is still inflammation no matter which one of these drugs you take because it cannot be detected on the current mri? Do some start out with spms or ppms and skip the rr phase altogether? and if so do they have inflammation? Does someone that has had ppms have a lot of lesions or is that not necessarily true, you think that severe disability would show up huge on an mri weather on the brain or spinal chord.
Never a shortage of good questions Rob, but sadly there has always been a shortage of good answers when MS is involved.
The world of MS according to Bob?
robbie wrote:
We are always talking about all these drugs stopping relapses which means that it is stopping inflammation so is it possible that there is still inflammation no matter which one of these drugs you take because it cannot be detected on the current mri?
I think what you're saying is absolutely correct....that we've labeled PPMS and SPMS as being hard to treat and not responsive to treatment based on incorrect information.....it's incorrect to think that MRI shows inflammation accurately and it's incorrect to think that past treatments and treatment strategies (long term suppression) do any more than dampen inflammation. It's foolishness to assume that they eliminate inflammation.
robbie wrote:
Do some start out with spms or ppms and skip the rr phase altogether?
First, benign MS, Clinically Isolated syndrome, rrms, spms, ppms, prms are nothing more than terms that we invented as communication aids. MS is what it is and will be what it will be regardless of the labels we give it.
By our definition, people who skip the rr phase altogether are considered PPMS and in fact the lack of the RRMS phase is THE distinguishing factor between SPMS and PPMS.
I'm convinced that PPMS and SPMS are the same thing and that in PPMS the RRMS phase wasn't really skipped but was so mild that MS wasn't diagnosed until reaching the SPMS phase and at that point, by our definition, was considered PPMS.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Thu Jul 10, 2008 3:05 pm Post subject:
so can a person with severe disability have little activty on their mri. seems allot of the trials need to see that you have an active mri and how is it possible that a person with spms or ppms(same thing)does not have an active mri,
take the person that is diagnosed with ppms right from the start and now years later they are very disabled did this person get there without any inflamation that was noticable on an mri,and if it took allot of inflamaton to get to the point he's at (which i assume it did)why were there no drugs for him?
this person is someone i worked with who is now in a long term care facility. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: Sep 11, 2007 Posts: 667 Location: southern California
Posted: Thu Jul 10, 2008 3:37 pm Post subject:
You've hit the nail on the head, Rob...just because there's no activity on the MRI, doesn't mean things aren't progressing.
Bob...The name of the blood test Jeff has is an ESR, Erythrocyte sedimentation rate. His GP ordered it because of all his weird petechiae and bruises....she was ruling out leukemia and vasculitis, which were negative, but this test keeps coming back high. It is a non-specific test, and all it does is show inflammation. I'll bet the bank that all MS patients have high Sed rates on this test.
I'm considering consulting a hematologist on this one.
I agree with the world according to Bob. RRMS is the stage when disability is low because of plasticity and lack of damage. As the inflammation and damage continue, you just run out of nerves to rewire.
Doesn't mean we're giving up the good fight, however!
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Thu Jul 10, 2008 4:05 pm Post subject:
i guess what i am thinking is how they (the trial people) can say no you don't qualify because you don't have an active mri. is rrms a different disease or ?? i just don't understand this. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
That's the first nail in the "neurodegeneration in the absence of inflammation theory.
I'm curious and hope you're not offended, but whose theory is that besides yours Bob? I've never understood that to be the major question in the inflammation vs. neurodegeneration debate.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 4:21 pm Post subject:
I see that others have posted again, but it took me a REALLY long time to write this so I'm sending it anyway!
robbie wrote:
so can a person with severe disability have little activity on their mri.
By "activity" I'm not sure if you mean lesions in general or enhancing lesions. If you're referring to enhancing lesions the answer is a definite yes. If you're referring to lesions in general the answer is that it's never surprising to see less damage on MRI than you would expect considering the amount of disability...or the other way around. What is seen on MRI doesn't always correlate very well with symptoms/disability.
robbie wrote:
how is it possible that a person with spms or ppms(same thing)does not have an active mri,
My point is that if you were able to hold a brain with global, low grade inflammation in your hand and look at it with your naked eyes you wouldn't notice signs of inflammation. With that in mind, there's not a hope in hell that you could discern that same inflammation on MRI.
Over time, global, low grade inflammation is still capable of damage but certainly isn't something that you could capture on MRI......in other words, "neurodegeneration without inflammation" is most sensibly "neurodegeneration caused by inflammation that our drugs have been incapable of treating effectively and inflammation which we've been unable to see with MRI".
robbie wrote:
take the person that is diagnosed with ppms right from the start and now years later they are very disabled did this person get there without any inflamation that was noticable on an mri,and if it took allot of inflamaton to get to the point he's at (which i assume it did)why were there no drugs for him?
this person is someone i worked with who is now in a long term care facility.
Somewhere I mentioned earlier that, more than anything, MS should be considered an "insideous" disease (Webster's:2 a: having a gradual and cumulative effect : subtle <the insidious pressures of modern life> b: of a disease : developing so gradually as to be well established before becoming apparent). Sure, the intensive inflammation of whatever is responsible for relapsing/remitting can cause quick neural damage, but low grade inflammation and time also add up to the accumulation of damage.
robbie wrote:
why were there no drugs for him?
Those are exactly the points that I was trying to make earlier Rob. Not being able to see the inflammation on MRI makes us assume that there isn't inflammation, combined with the fact that our treatments have only been able to dampen and not eliminate inflammation. Additionally, it's VERY important to keep in mind that although inflammation IS a factor in SPMS and PPMS, in those phases inflammation becomes much less a factor in symptoms/disability and actual neural damage is more responsible for the symptoms/disability. That means that even when inflammation is effectively eliminated in SPMS/PPMS, less than spectacular results are seen......although I would think that someone would want the disease process/progression stopped as much as anyone else?
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Last edited by Lyon on Thu Jul 10, 2008 7:36 pm; edited 1 time in total
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 4:39 pm Post subject:
Shayk wrote:
Bob
Quote:
That's the first nail in the "neurodegeneration in the absence of inflammation theory.
I'm curious and hope you're not offended, but whose theory is that besides yours Bob? I've never understood that to be the major question in the inflammation vs. neurodegeneration debate.
Thanks! All references welcome and appreciated.
Sharon
Hi Sharon,
I'd be delighted to respond but I don't understand the question.
Obviously I'm certain that this is my theory but I'm not certain if anyone else share it. In it's defense, it is based on two facts....
1. that (currently used) MRI isn't very effective at documenting MRI.
2. current treatments dampen but don't eliminate inflammation.
Specifically what I don't understand is:
big meanie who likes to pick on Bob wrote:
I've never understood that to be the major question in the inflammation vs. neurodegeneration debate.
You've never understood WHAT to be the big question in the inflammation vs neurodegeneration debate?
As an afterthought Sharon, there are those who question whether inflammation is responsible for neurodegeneration and there are those who take the lack of "evident" inflammation on MRI and continuing neurodegeneration to mean that there is such a thing as "neurodegeneration in the absence of inflammation". The latter is what I've been addressing and I think the difference is why you and I aren't understanding each other? ....maybe??
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
big meanie who likes to pick on Bob wrote:
I've never understood that to be the major question in the inflammation vs. neurodegeneration debate.
You've never understood WHAT to be the big question in the inflammation vs neurodegeneration debate?
Thanks Bob--I'm really not trying to pick on you. I just don't have a clue as to why you repeatedly focus on neurodegeneration without inflammation. I have the impression that's a major point you're trying to make and obviously refute, but WHY?
According to your theory, as I understand it, the question would be: Is there neurodegeneration in the absence of inflammation? My question to you is: Do you think that's the question they're trying to answer in the neurodegeneration vs inflammation debate?
Responding to your "afterthought"--sorry, didn't see it before.
Quote:
there are those who question whether inflammation is responsible for neurodegeneration
Quote:
there are those who take the lack of "evident" inflammation on MRI and continuing neurodegeneration to mean that there is such a thing as "neurodegeneration in the absence of inflammation"
Ok, I understand the second quote as one interpretation of the Campath trial. Inflammation was more or less eliminated but brain atrophy continued in people with SPMS.
I've just thought the focus in the debate was primarily centered on which came first--the neurodegeneration or the inflammation?
There are definitely MS researchers who theorize that the neurodegeneration occurs before the inflammation and that the inflammation is secondary to the neurodegeneration. I don't know that they generally believe that inflammation doesn't ultimately contribute to neurodegeneration though.
I tend to think the neurodegeneration just might precede and result in the inflammation, but the inflammation (visible/invisible) could also certainly contribute to the neurodegeneration.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 6:07 pm Post subject:
Shayk wrote:
Hopefully that sorts it out....
In the end we are always and only left to our best guesses!
Shayk wrote:
Responding to your "afterthought"--sorry, didn't see it before.
That's why I pointed out that it was an afterthought. I added it later and it probably wasn't there the first time you read it!
Shayk wrote:
Ok, I understand the second quote as one interpretation of the Campath trial. Inflammation was more or less eliminated but brain atrophy continued in people with SPMS.
You hit the nail on the head, although again, we bounce off the issue of whether or not inflammation was REALLY eliminated, as judged by MRI.
Also, I think it's wonderful that so many of my friends have found such good results from Campath treatment and I hope and expect those good results to continue. On the other hand, although I often include Campath in with Revimmune and Tovaxin as exciting treatment improvements, something isn't kosher with a treatment for autoimmunity that increases incidence of another autoimmune disease (Graves/Hashimoto). I can't put my finger on the problem, but something isn't right the results seen from Campath and it's certain that Campath isn't doing something it should or is doing something that it shouldn't.
My point is that to base judgments on Campath results with the consideration that Campath is doing as it ought, is.....going to be found to have been a foolish move. It seems the results aren't quite the same with HDC and Tovaxin and we need to be prepared and willing to modify some related outlooks in this matter.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Thu Jul 10, 2008 6:38 pm Post subject:
Quote:
i guess what i am thinking is how they (the trial people) can say no you don't qualify because you don't have an active mri. is rrms a different disease or ?? i just don't understand this
_________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Your focus and emphasis, if I understand correctly, seems to be on eliminating visible and invisible inflammation. My focus is on stopping neurodegeneration.
If they'd just get on with sorting it out I bet we'd both be happy campers.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 6:56 pm Post subject:
Shayk wrote:
Your focus and emphasis, if I understand correctly, seems to be on eliminating visible and invisible inflammation. My focus is on stopping neurodegeneration.
Yes. Not to start an argument but my conviction is that if visible and invisible inflammation was eliminated, neurodegeneration would stop.
Shayk wrote:
If they'd just get on with sorting it out I bet we'd both be happy campers.
Through all of this, what won't leave my mind is the need for something specific to the MS process to be identified. Then it would be EASY to determine how effective a treatment is by whether or not that factor was eliminated. Since I'm the "parasite" guy I've got an unconventional theory on that one too. Because all of us in the developed countries experience the necessary environmental predisposition there is nothing specific to MS to be identified among us and the differing factor can only be isolated by investigating the difference between our systems and those of the residents of undeveloped countries.
I've got more brain farts than Carter has little liver pills
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Thu Jul 10, 2008 7:05 pm Post subject:
Who gives a shit Chicken or the Egg... why won't they give these drugs to spms, there are people here who are border line rr/spms getting accepted or not being accepted and it feels like there is a window here that if it closes you will be left behind. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
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I've never understood that to be the major question in the inflammation vs. neurodegeneration debate.
In the end we are always and only left to our best guesses!
