Aa
Wow has anyone read this yet?
Hi,
I just had this article recommended:
http://www.mscenter.org/images/stories/InformsSummer09lowres.pdf
Its very interesting to read these therory's, have a read and tell me what you think.
Cheers.....JJ
I just had this article recommended:
http://www.mscenter.org/images/stories/InformsSummer09lowres.pdf
Its very interesting to read these therory's, have a read and tell me what you think.
Cheers.....JJ
That's very interesting about your son. I hope more is found out about Asperger's and autism, so that every child with it can be reached. This disease has me perplexed more than any other.
I share you sentiment about telling others not to give up!
Deb
I share you sentiment about telling others not to give up!
Deb
COMMUNITY LEADER
This article explains so much of what i believe about the brain, the ability to repair and rewire, so we are talking brain plasticity here. I have first hand evidence of this, not only with my self but with my son too. When L was 3 the clever Dr informed me he was Autistic and probably not bad enough to be institutionalised, because he had Asperger Syndrome which is on the highest end of the Autism Spectrum. At 4 he went to a institutionalised special school for Autistic children, gaining access to their early intevention program, terrible upside down reaction that traumatised him instead of helping, so i pulled him out and did what i saw he needed and stopped following the one stop shop aproach. I dont recommend anyone NOT follow medical advice but in his case their medical advice was to drug him into a zombie so he would be compliant, taking away this childs incredible intelligence and i wasn't ever going to do that to him.
Today this same child is grade skipped and on full scholarship to a private school, they believed when he was 10 he had the mind of a 20 year old, so he's exceptionally gifted. What do you then believe, that i have found the miracle cure for Autism - NO, that they misdiagnosed - possible but we'll never know, that he is still Autistic and he was taught what his brain was missing therefore utalising brain plasticity - YES, how can i not believe? No one would ever suspect he has Autism today, he's not a 'normal' child because his level of intelligence is abnormal but what makes a child Autistic is no longer there, his brain did that.
Deb, your number 8 & 9 is my fear, when will my brain run out of pathways, can it, will it one day stop re-wiring, i just dont know the answer. What i do know is that i 'was' gifted and today i'm surely no longer, never have I not been a camelian with the abilty to adapt and learn, who will i be when or if i loose the avenue to regain most of what i loose each time i have an episode? I will not give up on what i believe because its easier, i continue to fight this with the only thing i know has worked for me, let the medical world catch up in their slow methodical way but I will fight until i've been proven wrong. I cant bring myself to mask the symtoms, my brain is still working, its telling me the signals are still intermittently getting through, some neurons i'm sure are severed by black holes others are damaged but not destroyed because i am gradually regaining what i lost.
I am walking better than i have in months, i am talking better than i have in months, I have more energy than i had, I am thinking more clearly, and the list goes on, nothing else matters to me but getting back my cognitive abilities, mobility and control of the fatigue, for this i am on my own. I really cant afford to wait for the dx, i would still be bed ridden if i did nothing but wait, it doesn't even matter what 'it' is called i dont have the time to waste if i want to get back most of what i lost so i will continue to fight 'it' in the only way i know how and i will let the medical community catch up with me.
Cheers....JJ
Gee i sound weird but my intent was to say never give up on your self so i hope my story doesnt put anyone off :)
Today this same child is grade skipped and on full scholarship to a private school, they believed when he was 10 he had the mind of a 20 year old, so he's exceptionally gifted. What do you then believe, that i have found the miracle cure for Autism - NO, that they misdiagnosed - possible but we'll never know, that he is still Autistic and he was taught what his brain was missing therefore utalising brain plasticity - YES, how can i not believe? No one would ever suspect he has Autism today, he's not a 'normal' child because his level of intelligence is abnormal but what makes a child Autistic is no longer there, his brain did that.
Deb, your number 8 & 9 is my fear, when will my brain run out of pathways, can it, will it one day stop re-wiring, i just dont know the answer. What i do know is that i 'was' gifted and today i'm surely no longer, never have I not been a camelian with the abilty to adapt and learn, who will i be when or if i loose the avenue to regain most of what i loose each time i have an episode? I will not give up on what i believe because its easier, i continue to fight this with the only thing i know has worked for me, let the medical world catch up in their slow methodical way but I will fight until i've been proven wrong. I cant bring myself to mask the symtoms, my brain is still working, its telling me the signals are still intermittently getting through, some neurons i'm sure are severed by black holes others are damaged but not destroyed because i am gradually regaining what i lost.
I am walking better than i have in months, i am talking better than i have in months, I have more energy than i had, I am thinking more clearly, and the list goes on, nothing else matters to me but getting back my cognitive abilities, mobility and control of the fatigue, for this i am on my own. I really cant afford to wait for the dx, i would still be bed ridden if i did nothing but wait, it doesn't even matter what 'it' is called i dont have the time to waste if i want to get back most of what i lost so i will continue to fight 'it' in the only way i know how and i will let the medical community catch up with me.
Cheers....JJ
Gee i sound weird but my intent was to say never give up on your self so i hope my story doesnt put anyone off :)
Hey, thanks! Very darn interesting!
Especially good info for those with black holes and unchanging MRI's that their neuro's poo poo.
Especially good info for those with black holes and unchanging MRI's that their neuro's poo poo.
Wow is right! Besides the big points that you've pointed out I found several other things that were very interesting and/or significant:
1. When an area of the brain is injured once, those same areas are likely to be a target of further attacks and inflammation.
2. MRIs are insensitive to seeing the gradual progression of lesions over time. See number 3 as the explaination.
3. When an MRI is read as having "no change" there may be overinterpreting of the data. This is because "new lesions may appear in the bed of old lesions, and may be buried under old disease where you can't see them."
4. What determines the severity of the MS is not the amount of inflammation, but how damaging it is to the nerve component. This is seen on the MRI as T1 black holes and marked loss of gray matter.
5. When myelin destruction is measured specifically, it doesn't correlate very well with the amount of disability a person may have. Again, it's the type of immune attack that actually destroys the nerve fibers.
6. Location of the lesion doesn't always show clinically. It depends on "whether it occurs in an eloquent pathway" and if the "attack . . . actually destroys nerve fibers."
7. The current classification system we use (relapsing/remitting, etc.) doesn't help with predicting if a patient will respond to therapy. The predictor as to whether or not that they will respond is their age and if they are having active inflammation (measured by new T2 lesions, gad-enhancing lesions, relapse, etc.).
8. The term "remission" is not accurate. "The disease is actually very active during this phase but it's clinically invisible, and because it is invisible, we are missing the damage that is occurring." What is actually happening during this phase is the brain's attempt to repair itself (cortical rewiring) to compensate for the injury caused by the attacks.
9. What you probably see in progressive disease is most likely caused when the brain can no longer compensate and mask the activity. This may be due to having no more reserve capacity to do so because of lack of good neurons, etc.
This is an excellent article. I can go on and on pointing out what I've learned. Thanks, JJ for sharing!
Deb
1. When an area of the brain is injured once, those same areas are likely to be a target of further attacks and inflammation.
2. MRIs are insensitive to seeing the gradual progression of lesions over time. See number 3 as the explaination.
3. When an MRI is read as having "no change" there may be overinterpreting of the data. This is because "new lesions may appear in the bed of old lesions, and may be buried under old disease where you can't see them."
4. What determines the severity of the MS is not the amount of inflammation, but how damaging it is to the nerve component. This is seen on the MRI as T1 black holes and marked loss of gray matter.
5. When myelin destruction is measured specifically, it doesn't correlate very well with the amount of disability a person may have. Again, it's the type of immune attack that actually destroys the nerve fibers.
6. Location of the lesion doesn't always show clinically. It depends on "whether it occurs in an eloquent pathway" and if the "attack . . . actually destroys nerve fibers."
7. The current classification system we use (relapsing/remitting, etc.) doesn't help with predicting if a patient will respond to therapy. The predictor as to whether or not that they will respond is their age and if they are having active inflammation (measured by new T2 lesions, gad-enhancing lesions, relapse, etc.).
8. The term "remission" is not accurate. "The disease is actually very active during this phase but it's clinically invisible, and because it is invisible, we are missing the damage that is occurring." What is actually happening during this phase is the brain's attempt to repair itself (cortical rewiring) to compensate for the injury caused by the attacks.
9. What you probably see in progressive disease is most likely caused when the brain can no longer compensate and mask the activity. This may be due to having no more reserve capacity to do so because of lack of good neurons, etc.
This is an excellent article. I can go on and on pointing out what I've learned. Thanks, JJ for sharing!
Deb
COMMUNITY LEADER
Basically MS is attacking your neurons long before you have symptoms of the cognitive disabling aspects of MS, the brain regenerates its self until it cant anymore and the person with MS has unrecoverable cognitive deficits, therefore challenging your mind is good for your brain but thats further down, its a change in the direction of when, how and why and its from a reliable source and well worth the information you'll get out of reading it. This is from the first page....
[ What they discovered was evidence of “pronounced inflammation” not only in the brain tissue of people with acute and relapsing MS, but also in the brains of people with secondary and primary progressive disease. Evidence of demyelination and axonal degeneration was only found when there was also evidence of acute inflammation. These
data strongly suggest that there is not a transition to a secondary disease process
and challenge the notion that, in MS, the inflammation stops and then the
neurodegenerative process takes over.]
THis part is very important......
[ The third advance in our thinking about MS is that we now believe the major target of the immune attack on the brain is not myelin--it’s the central nervous system--it’s neurons. In most patients neurons are included but in some patients they are the dominant targets. So, MS doesn’t just attack white matter in the brain—it attacks gray
matter as well. It is not the number of white spots (lesions) patients have—it
is the decrease in the population of neurons, that is, decrease in the cortical
gray matter and deep gray matter-- that ultimately determines disability
and probably the onset of secondary progressive disease. ]
Theres a lot to read but its given me confidence, i think its now or never for me, i've had the disability status done (GP friend) and when i began i was a 7.5, today thats down to 6.5 and i've a long way to go but i'm doing it. I'm too scared to get my cognitive abilities evaluated because thats too confronting, i'll settle for believing i'm improving because of what i can do now compaired to what i couldnt do last week or the week before. I have hope!
Cheers.....JJ
[ What they discovered was evidence of “pronounced inflammation” not only in the brain tissue of people with acute and relapsing MS, but also in the brains of people with secondary and primary progressive disease. Evidence of demyelination and axonal degeneration was only found when there was also evidence of acute inflammation. These
data strongly suggest that there is not a transition to a secondary disease process
and challenge the notion that, in MS, the inflammation stops and then the
neurodegenerative process takes over.]
THis part is very important......
[ The third advance in our thinking about MS is that we now believe the major target of the immune attack on the brain is not myelin--it’s the central nervous system--it’s neurons. In most patients neurons are included but in some patients they are the dominant targets. So, MS doesn’t just attack white matter in the brain—it attacks gray
matter as well. It is not the number of white spots (lesions) patients have—it
is the decrease in the population of neurons, that is, decrease in the cortical
gray matter and deep gray matter-- that ultimately determines disability
and probably the onset of secondary progressive disease. ]
Theres a lot to read but its given me confidence, i think its now or never for me, i've had the disability status done (GP friend) and when i began i was a 7.5, today thats down to 6.5 and i've a long way to go but i'm doing it. I'm too scared to get my cognitive abilities evaluated because thats too confronting, i'll settle for believing i'm improving because of what i can do now compaired to what i couldnt do last week or the week before. I have hope!
Cheers.....JJ
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