Moving the treatment goalposts
Moving the treatment goalposts
Here is a link to neurologists who met in Australia. It contains lots of video clips which I can't be bothered to watch at the moment. Would be grateful if someone could tell me what the upshot was?
Bromley
http://www.msaustralia.org.au/publications/video.html
Bromley
http://www.msaustralia.org.au/publications/video.html
Bromley,
I watched all the MRI clips.
Pretty much same old same old:
initial lesion load is strongly predictive of progression both clinically and pathologically as a whole; however, correlation between # of lesions & disability not so good in an individual.
It all hinges on lesion location.
Patient went from normal to parapalegic within 5 years, later died from heart problems. Had oligoclonal banding but only 1 lesion in spinal chord.
As many as 10 lesions per one clinical symptom depending on their location.
They have a good handle on how an individual lesion acts over time but much more difficult to gauge/predict course when you're looking at anywhere from 4 to 100 lesions in the same person that may each be at a different state of progression.
Don't even bother with the myelin sheath clip
I did not watch any of the interviews - maybe later.
I watched all the MRI clips.
Pretty much same old same old:
initial lesion load is strongly predictive of progression both clinically and pathologically as a whole; however, correlation between # of lesions & disability not so good in an individual.
It all hinges on lesion location.
Patient went from normal to parapalegic within 5 years, later died from heart problems. Had oligoclonal banding but only 1 lesion in spinal chord.
As many as 10 lesions per one clinical symptom depending on their location.
They have a good handle on how an individual lesion acts over time but much more difficult to gauge/predict course when you're looking at anywhere from 4 to 100 lesions in the same person that may each be at a different state of progression.
Don't even bother with the myelin sheath clip
I did not watch any of the interviews - maybe later.
Thanks Axiom - one always hopes for a real breakthrough but one is always disappointed.
Bromley
PS Paraplegic certainly falls within the list of MS 'symptoms' where I would be saying goodbye to life. But thinking about it, how does one commit suicide in such circumstances without involving a loved one? Sorry to be so morbid but it's just crossed my mind.
Bromley
PS Paraplegic certainly falls within the list of MS 'symptoms' where I would be saying goodbye to life. But thinking about it, how does one commit suicide in such circumstances without involving a loved one? Sorry to be so morbid but it's just crossed my mind.
Last edited by bromley on Wed Nov 16, 2005 11:32 am, edited 1 time in total.
Wesley,
Other than the fact that spinal chord and optic nerve involvement seem to predict type of disability with fairly good correlation, I do seem to remember reading at least one study on lesion mapping (I'm thinking it was out of Canada in 2003 or 2004) saying that they had demonstrated some significant correlations between cerebral lesion location and specific disabilities.
I'm thinking it's interesting and worthwhile from a scientific standpoint, but until someone comes up with a way to either prevent the lesions or to heal them once they've been found... unfortunately does not mean much for those dealing with the disease.
Besides, it seems there's always an exception. In the case study reported on in the video clips they think one small spinal chord lesion (even called it singular sclerosis) resulted in paraplegia, but I know of someone who has multiple active spinal lesions with edema thrown in, yet has minimal disability (one arm slightly affected with numbness/weakness/clumsiness)
Other than the fact that spinal chord and optic nerve involvement seem to predict type of disability with fairly good correlation, I do seem to remember reading at least one study on lesion mapping (I'm thinking it was out of Canada in 2003 or 2004) saying that they had demonstrated some significant correlations between cerebral lesion location and specific disabilities.
I'm thinking it's interesting and worthwhile from a scientific standpoint, but until someone comes up with a way to either prevent the lesions or to heal them once they've been found... unfortunately does not mean much for those dealing with the disease.
Besides, it seems there's always an exception. In the case study reported on in the video clips they think one small spinal chord lesion (even called it singular sclerosis) resulted in paraplegia, but I know of someone who has multiple active spinal lesions with edema thrown in, yet has minimal disability (one arm slightly affected with numbness/weakness/clumsiness)
Good point
I don't know that I've seen any MS research address that, though it certainly makes sense.
Look at children who have had a hemispherectomy. I'm amazed at how plastic their brains are. Of course a quick search shows that there is disagreement about whether cognitive skills are impacted by the childs age at operation even with that type of procedure.... though I doubt there are many adolescents or adults to use as a comparison.
Of course that does not bode well for my adolescent example above unless we can stop lesion development and soon!
I don't know that I've seen any MS research address that, though it certainly makes sense.
Look at children who have had a hemispherectomy. I'm amazed at how plastic their brains are. Of course a quick search shows that there is disagreement about whether cognitive skills are impacted by the childs age at operation even with that type of procedure.... though I doubt there are many adolescents or adults to use as a comparison.
Of course that does not bode well for my adolescent example above unless we can stop lesion development and soon!
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Carolw,
This is what I found.
http://en.wikipedia.org/wiki/Multiple_Sclerosis
My first symptom was ON and I had a spinal lesion that caused numbness and tingling in my hands/arms. Had a full recovery with both. I found this information on the link above if anyone is interested.
Hope this helps.
]Axion, you mentionned that lesions in optic nerve and spinal cord mean something in terms of prognosis, I didn't know that, Can you explain please, thanks Carole[/b
This is what I found.
Initial MS symptoms of visual loss or sensory problems, such as numbness or tingling, are markers for a relatively good prognosis, whereas difficulty walking and weakness are markers for a relatively poor prognosis. Better outcomes are also associated with the presence of only a single symptom at onset, the rapid development of initial symptoms, and the rapid regression of initial symptoms.
http://en.wikipedia.org/wiki/Multiple_Sclerosis
My first symptom was ON and I had a spinal lesion that caused numbness and tingling in my hands/arms. Had a full recovery with both. I found this information on the link above if anyone is interested.
Hope this helps.
Karen (OneEyeBlind)
* I don't suffer from insanity, I enjoy it!
* I don't suffer from insanity, I enjoy it!
Spinal Cord Lesions
I am concerned about the prognosis of cases in which spinal cord lesions & walking difficulties are the primary problem. Why is disease activity in the spine more detrimental?
Denver,
I think the problem with spinal lesions is that, unlike the brain, there's not a lot of room to work round e.g. find other pathways. I think I had three spinal cord lesions on my MRI but 18 months after my first attack I can still walk fine.
One neuro told me that factors indictating a worse prognosis are (i) male gender (ii) a progressive course from the outset (iii) motor problems at the outset (rather than sensory) (iv) later onset of MS (eg 40+) (v) not making complete recovery from first attack
This didn't really help me as I'm male, was dx at 39 (no previous symptoms), sensory problems rather than motor, RR at dx, never full recovered sensitivity in palm of right hand.
When I saw another neuro on Monday I asked about prognosis. He said it was difficult to say but said that I had a low lesion load which was good.
So I don't think they really have much of a clue. At least I had 38 great years to look back on. My heart really goes out to those dx in their teens and early 20s. A friend's father has been dx with ALS at 80. She is devastated but I think I would swap MS at 39 for something worse at 80 (he was healthy up to then).
I think the lack of prognosis and the uncertainy are one (of many) of the worse symptoms of this disease. In five years time I could be a paraplegic or still walking OK and working! All my friends are very brave - 'look on the positive side etc, etc' but you have to be in this position to really understand how difficult it is.
But of course, the other factor is current / future treatments and how this effects the prognosis. If effective nero-protective agents arrive then we shouldn't (in theory) become any more disabled. Stem cells and treatments to regenerate nerves might result in lost functions being restored.
This probably doesn't help much at all.
Ian
I think the problem with spinal lesions is that, unlike the brain, there's not a lot of room to work round e.g. find other pathways. I think I had three spinal cord lesions on my MRI but 18 months after my first attack I can still walk fine.
One neuro told me that factors indictating a worse prognosis are (i) male gender (ii) a progressive course from the outset (iii) motor problems at the outset (rather than sensory) (iv) later onset of MS (eg 40+) (v) not making complete recovery from first attack
This didn't really help me as I'm male, was dx at 39 (no previous symptoms), sensory problems rather than motor, RR at dx, never full recovered sensitivity in palm of right hand.
When I saw another neuro on Monday I asked about prognosis. He said it was difficult to say but said that I had a low lesion load which was good.
So I don't think they really have much of a clue. At least I had 38 great years to look back on. My heart really goes out to those dx in their teens and early 20s. A friend's father has been dx with ALS at 80. She is devastated but I think I would swap MS at 39 for something worse at 80 (he was healthy up to then).
I think the lack of prognosis and the uncertainy are one (of many) of the worse symptoms of this disease. In five years time I could be a paraplegic or still walking OK and working! All my friends are very brave - 'look on the positive side etc, etc' but you have to be in this position to really understand how difficult it is.
But of course, the other factor is current / future treatments and how this effects the prognosis. If effective nero-protective agents arrive then we shouldn't (in theory) become any more disabled. Stem cells and treatments to regenerate nerves might result in lost functions being restored.
This probably doesn't help much at all.
Ian
Sorry to be so slow responding - just saw this.carolew wrote:Axion, you mentionned that lesions in optic nerve and spinal cord mean something in terms of prognosis, I didn't know that, Can you explain please, thanks Carole
I think there is still a lot of work to be done in this area.
I don't know that it was so much prognosis per se but how lesion location relates to specific symptoms that we were talking about.
Lesions on the optic nerve have a strong correlation to visual disturbances.
(wonder how much $$$ they spent on that study - seems a pretty obvious conclusion)
In general studies do indicate that lesions in the spinal chord are more likely to lead to:
sensory or motor deficits
bowel & bladder disfunction
gait disturbances
ataxia
However, it seems you still can't make the prognosis jump since even with spinal lesions at least one study showed no strong correlation between extent of plaques and the degree of clinical disability.
It would seem that with lesions in the brain there would be more opportunity for other pathways to form, so it would be tougher to predict the type of disability a lesion in a specific location would cause.
I think Wesley made a good point in that timing of the lesion is probably key as well.
As I said, I have not seen any MS studies address this. If anyone has, I'd be interested in taking a look.
So we're back to the question Bromley posed in another thread... what that all important MRI scan really means?
Still far too many unknowns!
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