Aa
Everybody read...
There is an old thread by Heather called "It's Not the Amount of Lesions..."
I recommend that everyone read this entire thread. It introduces an important concept of atrophy of the brain and the spinal cord and how that is every bit as important as the lesions on MRIs.
Lesions that appear in the NAWM - Normal-Appearing White Matter are every bit as important in causing our disease as the lesions that the neurologists are so fixated on.
We will be talking more and more about Brain/Sinal cord atrophy and its relationship to disability. This type of damage does not show on the usual MRI and most of our neurologists don't even talk about it.
Please read this.
Quix
I recommend that everyone read this entire thread. It introduces an important concept of atrophy of the brain and the spinal cord and how that is every bit as important as the lesions on MRIs.
Lesions that appear in the NAWM - Normal-Appearing White Matter are every bit as important in causing our disease as the lesions that the neurologists are so fixated on.
We will be talking more and more about Brain/Sinal cord atrophy and its relationship to disability. This type of damage does not show on the usual MRI and most of our neurologists don't even talk about it.
Please read this.
Quix
I had read Heather's post earlier, but I printed it out and read it again. Scary stuff!! I'm researching for Shelly about her reaction to her MS meds and ran across the following article, thought you would be interested.
Use of the brain parenchymal fraction to measure whole brain atrophy in relapsing-remitting MS. Multiple Sclerosis Collaborative Research Group.
Neurology. 1999; 53(8):1698-704 (ISSN: 0028-3878) Rudick RA; Fisher E; Lee JC; Simon J; Jacobs L
Department of Neurology, Cleveland Clinic Foundation, OH 44195, USA.
BACKGROUND: Episodic inflammation in the CNS during the early stages of MS results in progressive disability years later, presumably due to myelin and axonal injury. MRI demonstrates ongoing disease activity during the early disease stage, even in some patients who are stable clinically. The optimal MRI measure for the destructive pathologic process is uncertain, however.
METHODS: In this post-hoc study, MRI scans were analyzed from patients with relapsing MS participating in a placebo-controlled trial of interferon beta-1a. The brain parenchymal fraction, defined as the ratio of brain parenchymal volume to the total volume within the brain surface contour, was used to measure whole brain atrophy. The relationship between disease features and brain atrophy and effect of interferon beta-1a were determined.
RESULTS: MS patients had significant brain atrophy that worsened during each of 2 years of observation. In many patients, brain atrophy worsened without clinical disease activity. Baseline clinical and MRI abnormalities were not strongly related to the rate of brain atrophy during the subsequent 2 years. Treatment with interferon beta-1a resulted in a reduction in brain atrophy progression during the second year of the clinical trial.
CONCLUSIONS: Patients with relapsing-remitting MS have measurable amounts of whole brain atrophy that worsens yearly, in most cases without clinical manifestations. The brain parenchymal fraction is a marker for destructive pathologic processes ongoing in relapsing MS patients, and appears useful in demonstrating treatment effects in controlled clinical trials.
http://www.medscape.com/medline/abstract/10563615
Hope this is informative. Sound like you feel better, I sure hope so, I don't like it when you're down.
Hugs
doni
Use of the brain parenchymal fraction to measure whole brain atrophy in relapsing-remitting MS. Multiple Sclerosis Collaborative Research Group.
Neurology. 1999; 53(8):1698-704 (ISSN: 0028-3878) Rudick RA; Fisher E; Lee JC; Simon J; Jacobs L
Department of Neurology, Cleveland Clinic Foundation, OH 44195, USA.
BACKGROUND: Episodic inflammation in the CNS during the early stages of MS results in progressive disability years later, presumably due to myelin and axonal injury. MRI demonstrates ongoing disease activity during the early disease stage, even in some patients who are stable clinically. The optimal MRI measure for the destructive pathologic process is uncertain, however.
METHODS: In this post-hoc study, MRI scans were analyzed from patients with relapsing MS participating in a placebo-controlled trial of interferon beta-1a. The brain parenchymal fraction, defined as the ratio of brain parenchymal volume to the total volume within the brain surface contour, was used to measure whole brain atrophy. The relationship between disease features and brain atrophy and effect of interferon beta-1a were determined.
RESULTS: MS patients had significant brain atrophy that worsened during each of 2 years of observation. In many patients, brain atrophy worsened without clinical disease activity. Baseline clinical and MRI abnormalities were not strongly related to the rate of brain atrophy during the subsequent 2 years. Treatment with interferon beta-1a resulted in a reduction in brain atrophy progression during the second year of the clinical trial.
CONCLUSIONS: Patients with relapsing-remitting MS have measurable amounts of whole brain atrophy that worsens yearly, in most cases without clinical manifestations. The brain parenchymal fraction is a marker for destructive pathologic processes ongoing in relapsing MS patients, and appears useful in demonstrating treatment effects in controlled clinical trials.
http://www.medscape.com/medline/abstract/10563615
Hope this is informative. Sound like you feel better, I sure hope so, I don't like it when you're down.
Hugs
doni
Ooh! I can't wait to discuss and learn more. I didn't think about spinal cord and atrophy, only brain. Not the usual MRI - change in sequences? Oh, I so recall the YCETU (you can't enlighten the unconscious) used here once, but not in a nice context. Very appropriately used Quizzle-sticks!
Unfortunately we are talking about a group of professionals who are either too lazy to keep up in their field or too stupid to understand anything beyond "ya gotta hav 9 of them there lesions."
There is no way to give them an education in their own field. That's why you have to move on. The good neurologists are definitely out there. One by one we are finding them. It sounds like we are advocating doctor shopping until we find one that will give us the diagnosis we want. But, actually we are doctor shopping until we find one that will look at us, examine us, and think hard.
"You can't enlighten the unconscious." (unknown)
Quix
There is no way to give them an education in their own field. That's why you have to move on. The good neurologists are definitely out there. One by one we are finding them. It sounds like we are advocating doctor shopping until we find one that will give us the diagnosis we want. But, actually we are doctor shopping until we find one that will look at us, examine us, and think hard.
"You can't enlighten the unconscious." (unknown)
Quix
How can the people in this situation tactfully let there neuros in on the secret?? It is truly heartbreaking what so many here are going through.
Thanks for all the hard work that everyone is doing on this forum , we are all blessed to have found it .
Love and hugs
Jo
Thanks for all the hard work that everyone is doing on this forum , we are all blessed to have found it .
Love and hugs
Jo
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