rr vs spms and ppms

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Lyon
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Post by Lyon » 10 years ago

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robbie
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Post by robbie » 10 years ago

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.
Had ms for 24 years now.

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cheerleader
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Post by cheerleader » 10 years ago

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 dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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robbie
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Post by robbie » 10 years ago

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.
Had ms for 24 years now.

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Shayk
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Post by Shayk » 10 years ago

Bob
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? :roll: I've never understood that to be the major question in the inflammation vs. neurodegeneration debate.

Thanks! All references welcome and appreciated. :)

Sharon

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Post by Lyon » 10 years ago

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Lyon
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Shayk
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Post by Shayk » 10 years ago

Bob
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?

Sharon

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Shayk
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Post by Shayk » 10 years ago

Bob

Responding to your "afterthought"--sorry, didn't see it before.
there are those who question whether inflammation is responsible for neurodegeneration

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.

Hopefully that sorts it out....

Sharon

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robbie
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Post by robbie » 10 years ago


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
Had ms for 24 years now.

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Shayk
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Post by Shayk » 10 years ago

Bob

Agreed--we are just left with a guess.

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. :)

Sharon

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Post by Lyon » 10 years ago

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robbie
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Post by robbie » 10 years ago

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.
Had ms for 24 years now.

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Post by jimmylegs » 10 years ago

robbie speaking of shit...

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