Hi,the info below is what i managed to retrieve from the page source and pasted here regarding our previous conversation. There was a tech glitch with a post i tried to add on the 19/3 and all the text disappeared so i have started a new thread.
------------------------------------------------------------------------------------------------------------
Hi again everyone,
Unfortunately struggle a bit with sorting through 'googled' pages.
It's nice to have others to help with the sorting and share.
The memory issues are definitely getting worse and are causing me more distress
Being an in-grained control freak doesn't help.
...I do find it easier on msw to be able to 'go back' and review posts in chronological order a bit like a diary and do a subject refresher.
Could not agree with you more Carolinemf! It seems that lately I am having bad memory issues. There are times I am talking to someone and can't remember a word I was going to use, so I have to restart my reply to them & hope I remember what I wanted to say. I often wonder how many other MS people encounter this. (wish conversations were in written form so I could go back and remember what we were talking about)
I actually understand your frustrations, as have experienced it myself. I think in one of your other posts, you mentioned your doc wanted you to get cognitive testing. The testing can help you ID these problems and how to try to compensate for it. If nothing else, it gave me the knowledge that I wasn't imagining my issues. They were real.
Jreagan - thanks. Will attempt to discuss with neuro again
Carolinemf - there are multiple parts to memory. You have to focus to be able to retain, then commit to short and long term memory. In addition, there is the retrieval from short and long term. And the complexity of being able to visualize, organize, and verbalize these memories.
I had previously brought two articles to neuro, which is when he discussed the volume aspect can't be truly measured by MRI, as not three dimensional.
Kathy, it sounds like you and your neurologist may be talking about apples and oranges. It just isn't clear why
Your neuro is absolutely correct in that absolute volume can't be measured by MRI. It can't even be done in a living person because, to obtain absolute volume, the brain has to be removed and weighed and measured.
But what isn't clear is why your neuro would be taking that angle because 1) there's no practical reason to need to know absolute brain volume, and 2) it's obvious that you weren't asking about absolute volume -- you wanted to know about loss of volume and loss of function because of it
Of course it's possible to come up with very good, very useful estimates of brain volume and loss of brain volume from MRIs -- either from direct measurements or by new electronic calculations. It's not much different than coming up with a reasonably accurate estimate of how much water is in a bucket by knowing only reasonably accurate measurements of the bucket. Knowing how big the skull is can by itself lead to a reasonably good estimate of how much brain is filling it up. Brain volume loss can in many cases be seen just by an uneducated look at an MRI. Estimates are even better now when new software is used with the MRI data.
Again, there are hundreds and hundreds of articles in the scientific literature about loss of brain volume and who has bigger brains and who has smaller brains. So how and why your neuro got sidetracked by absolute volume is a mystery only he can explain. I hope you get it straightened out.
Hi again everyone,
Thanks so much for posting this link.
I am still very interested in any and all info I can get. So Thanks to all who have contributed.
Unfortunately struggle a bit with sorting through 'googled' pages.
It's nice to have others to help with the sorting and share.
The memory issues are definitely getting worse and are causing me more distress.
Being an in-grained control freak doesn't help.
It is rather peculiar actually that I still can understand things i read/ watch for the most part, but it is almost impossible to relay or tell some one else the details only minutes afterwards. So i sound like a blithering idiot!
I do find it easier on msw to be able to 'go back' and review posts in chronological order a bit like a diary and do a subject refresher. So thanks again every one and msw.
Hi Carolinemf
Also, have you come across this article from the AJNR (American Journal of Neuroradiology)
http://ajnrdigest.org/brain-atrophy-multiple-sclerosis/
Take Care
KoKo, MANY thanks to you for posting this! I've often wondered about my atrophy, and this article really puts it in perspective for me.
Peace to all,RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')
jreagan70
There are hundreds of articles in the medical literature about brain atrophy. To keep things relevant, you can start by googling "brain atrophy and multiple sclerosis," then try variations of that, and then move on to googling brain atrophy and other conditions like obesity, diabetes, and Alzheimer's. Google something like "how to measure brain atrophy." There's enough information out there to keep you busy for awhile.
pennstater
Can you provide me a link I can look at that discusses MRI capability related to MS brain atrophy? I have asked 3 neuros, 2 of whom I respect highly, and was told that since volume is missing part of puzzle, it is not really a good measure, that pieces of the picture are missing.
I want to have an intelligent and meaningful conversation on this with my neuro again and would like to have scientific facts with me. But want to go my due diligence in understanding articles.
When atrophy shows on MRI, does it have to be significant? Is the issue that when atrophy shows, can't tie into cognitive dysfunction that it may cause?
I am not obsessing over it, but want to make sure my neuro is being straight with me. I don't understand why he would sugarcoat it, as he doesnt with other areas where no answers may be available. Not being straight will make me question so much more.Thanks
Any help? I want to start preparing for next neuro appointment. To have a meaningful dialogue, will need time to digest the material and pull meaningful questions together. If you can't put links, can you provide the source and dates so I can find the articles.
Kathy Forgot, the other reason I don't get why neuro would sugar coat this discussion is he is a big proponent of lifestyle changes and activities that promote brain health.
He has no problem telling me that while Sudoku is ok, after you understands the patterns on difficult level, it isn't challenging enough. That I need to do things that challenge more than one sense at a time. And that I need to raise cardio level.
I don't get why he would shy away from the conversation, and frankly, pisses me off that he would.
jreagan70
This is the kind of overly-technical-to-the-point-of-being-nonsensical answer doctors give when they don't really want to answer the question. Hydration? Really?
While it may be true that it isn't possible to calculate the exact percentage of brain atrophy from an MRI, and that estimating atrophy may be different for the different neurodegenerative diseases, the medical literature contains ample credible research and articles about how brain atrophy can be and is estimated via MRI. The new heightened interest in brain atrophy and MS was spurred in part by existing MRI evidence.
Even someone who has never seen an MRI before can compare the MRI of a healthy brain and the MRI of a person with advanced Alzheimer's disease and see unmistakably how badly the brain has atrophied. Simple comparison against anatomical landmarks gives clues about atrophy in cases that aren't as obvious.
And for a neurologist to go further and say that brain volume can't be estimated by MRI not only disregards the existing evidence and scientific support for it, but is completely insulting to the neuroscientists who have been working with brain atrophy in neurodegenerative diseases and improving technology for measuring it since the MRI first began being used in commercial medicine some 30 years ago.
Brain atrophy is not a conversation a lot of neurologists want to have with their patients. Currently there's nothing that can be done to reverse existing atrophy. Talking about that can be a depressing conversation that isn't worth the amount of time it will take, so there's little constructive point in going there.
Until neurologists are ready to have meaningful conversations about medication and lifestyle choices for preventing brain atrophy and preserving brain health, a lot of them are going to shut down conversations with this kind of non-answer.
Kathy
Can you provide me a link I can look at that discusses MRI capability related to MS brain atrophy? I have asked 3 neuros, 2 of whom I respect highly, and was told that since volume is missing part of puzzle, it is not really a good measure, that pieces of the picture are missing.
I want to have an intelligent and meaningful conversation on this with my neuro again and would like to have scientific facts with me. But want to go my due diligence in understanding articles.
When atrophy shows on MRI, does it have to be significant? Is the issue that when atrophy shows, can't tie into cognitive dysfunction that it may cause?
I am not obsessing over it, but want to make sure my neuro is being straight with me. I don't understand why he would sugarcoat it, as he doesnt with other areas where no answers may be available. Not being straight will make me question so much more.
Thanks
Carolinemf
I'm afraid that I have to agree to a certain extent with JReagan.
I can quite clearly see the progression of atrophy on the multiple mri scans we compared- taken every 6 months over roughly 4 years. It doesn't require micro measurement, it is visible to the naked eye. I also don't believe that the extent of atrophy can be dismissed by or attributed to the possibility of something like needing to hydrate.
The one thing that I have learned while that researching this subject and it's link to MS and symptoms, DMTs and presentation is that treatments - like Tysabri- can cause noticeable atrophy because they reduce the inflammation of the brain and spinal cord and this in turn reduces the accompanying swelling that is present in the inflamed areas.
A lot of clinical research is now being directed at 'Grey matter damage' as possibly contributing just as much to ms progression as lesions so more accurate testing will probably be developed into the future .
I'm not positive what is causing my worrying Dementia like symptoms- I'm still exploring all possible contributors. It's possible the Tys has slowed my progression (from what it may have been) and that is what is visible on the mri's and my cog issues etc are just to be expected.
I hadn't heard atrophy mentioned as a part of ms until this year and then mostly because of my lesions being considered stable , yet showing considerable progression with symptoms.
It would be interesting to see if I ceased tysabri for a while would any swelling return and so lessen atrophy.
I'm still waiting for my neuro to email me info the he said outlines benefits to atrophy and cog fog attributed to being treated by Lemtrada. I haven't found anything showing any benefit to these from any treatment.
Thanks and all the best everyone.
jreagan70
Echo2099
He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible.
This is the kind of overly-technical-to-the-point-of-being-nonsensical answer doctors give when they don't really want to answer the question. Hydration? Really?
While it may be true that it isn't possible to calculate the exact percentage of brain atrophy from an MRI, and that estimating atrophy may be different for the different neurodegenerative diseases, the medical literature contains ample credible research and articles about how brain atrophy can be and is estimated via MRI. The new heightened interest in brain atrophy and MS was spurred in part by existing MRI evidence.
Even someone who has never seen an MRI before can compare the MRI of a healthy brain and the MRI of a person with advanced Alzheimer's disease and see unmistakably how badly the brain has atrophied. Simple comparison against anatomical landmarks gives clues about atrophy in cases that aren't as obvious.
And for a neurologist to go further and say that brain volume can't be estimated by MRI not only disregards the existing evidence and scientific support for it, but is completely insulting to the neuroscientists who have been working with brain atrophy in neurodegenerative diseases and improving technology for measuring it since the MRI first began being used in commercial medicine some 30 years ago.
Brain atrophy is not a conversation a lot of neurologists want to have with their patients. Currently there's nothing that can be done to reverse existing atrophy. Talking about that can be a depressing conversation that isn't worth the amount of time it will take, so there's little constructive point in going there.
Until neurologists are ready to have meaningful conversations about medication and lifestyle choices for preventing brain atrophy and preserving brain health, a lot of them are going to shut down conversations with this kind of non-answer.
Kathy
Echo2099
I had an appointment with my neuro a couple of weeks ago. I asked him about brain atrophy. He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible.
>Thanks for posting. My neuro said similar and that you can't tell volume by current MRI. Feel better reading this that he wasn't just trying to shield me from bad news or something!
Echo2099
I had an appointment with my neuro a couple of weeks ago. I asked him about brain atrophy. He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible
Sounds like a lot of variables can effect brain size.
Original post (approx - can't retrieve the rest)
Have been feeling like a confused little old lady for a while now probably years . saw neuro in June and he said atrophy is problem . never had that mentioned before etc etc
------------------------------------------------------------------------------------------------------------
Hi again everyone,
Unfortunately struggle a bit with sorting through 'googled' pages.
It's nice to have others to help with the sorting and share.
The memory issues are definitely getting worse and are causing me more distress
Being an in-grained control freak doesn't help.
...I do find it easier on msw to be able to 'go back' and review posts in chronological order a bit like a diary and do a subject refresher.
Could not agree with you more Carolinemf! It seems that lately I am having bad memory issues. There are times I am talking to someone and can't remember a word I was going to use, so I have to restart my reply to them & hope I remember what I wanted to say. I often wonder how many other MS people encounter this. (wish conversations were in written form so I could go back and remember what we were talking about)
I actually understand your frustrations, as have experienced it myself. I think in one of your other posts, you mentioned your doc wanted you to get cognitive testing. The testing can help you ID these problems and how to try to compensate for it. If nothing else, it gave me the knowledge that I wasn't imagining my issues. They were real.
Jreagan - thanks. Will attempt to discuss with neuro again
Carolinemf - there are multiple parts to memory. You have to focus to be able to retain, then commit to short and long term memory. In addition, there is the retrieval from short and long term. And the complexity of being able to visualize, organize, and verbalize these memories.
I had previously brought two articles to neuro, which is when he discussed the volume aspect can't be truly measured by MRI, as not three dimensional.
Kathy, it sounds like you and your neurologist may be talking about apples and oranges. It just isn't clear why
Your neuro is absolutely correct in that absolute volume can't be measured by MRI. It can't even be done in a living person because, to obtain absolute volume, the brain has to be removed and weighed and measured.
But what isn't clear is why your neuro would be taking that angle because 1) there's no practical reason to need to know absolute brain volume, and 2) it's obvious that you weren't asking about absolute volume -- you wanted to know about loss of volume and loss of function because of it
Of course it's possible to come up with very good, very useful estimates of brain volume and loss of brain volume from MRIs -- either from direct measurements or by new electronic calculations. It's not much different than coming up with a reasonably accurate estimate of how much water is in a bucket by knowing only reasonably accurate measurements of the bucket. Knowing how big the skull is can by itself lead to a reasonably good estimate of how much brain is filling it up. Brain volume loss can in many cases be seen just by an uneducated look at an MRI. Estimates are even better now when new software is used with the MRI data.
Again, there are hundreds and hundreds of articles in the scientific literature about loss of brain volume and who has bigger brains and who has smaller brains. So how and why your neuro got sidetracked by absolute volume is a mystery only he can explain. I hope you get it straightened out.
Hi again everyone,
Thanks so much for posting this link.
I am still very interested in any and all info I can get. So Thanks to all who have contributed.
Unfortunately struggle a bit with sorting through 'googled' pages.
It's nice to have others to help with the sorting and share.
The memory issues are definitely getting worse and are causing me more distress.
Being an in-grained control freak doesn't help.
It is rather peculiar actually that I still can understand things i read/ watch for the most part, but it is almost impossible to relay or tell some one else the details only minutes afterwards. So i sound like a blithering idiot!
I do find it easier on msw to be able to 'go back' and review posts in chronological order a bit like a diary and do a subject refresher. So thanks again every one and msw.
Hi Carolinemf
Also, have you come across this article from the AJNR (American Journal of Neuroradiology)
http://ajnrdigest.org/brain-atrophy-multiple-sclerosis/
Take Care
KoKo, MANY thanks to you for posting this! I've often wondered about my atrophy, and this article really puts it in perspective for me.
Peace to all,RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')
jreagan70
There are hundreds of articles in the medical literature about brain atrophy. To keep things relevant, you can start by googling "brain atrophy and multiple sclerosis," then try variations of that, and then move on to googling brain atrophy and other conditions like obesity, diabetes, and Alzheimer's. Google something like "how to measure brain atrophy." There's enough information out there to keep you busy for awhile.
pennstater
Can you provide me a link I can look at that discusses MRI capability related to MS brain atrophy? I have asked 3 neuros, 2 of whom I respect highly, and was told that since volume is missing part of puzzle, it is not really a good measure, that pieces of the picture are missing.
I want to have an intelligent and meaningful conversation on this with my neuro again and would like to have scientific facts with me. But want to go my due diligence in understanding articles.
When atrophy shows on MRI, does it have to be significant? Is the issue that when atrophy shows, can't tie into cognitive dysfunction that it may cause?
I am not obsessing over it, but want to make sure my neuro is being straight with me. I don't understand why he would sugarcoat it, as he doesnt with other areas where no answers may be available. Not being straight will make me question so much more.Thanks
Any help? I want to start preparing for next neuro appointment. To have a meaningful dialogue, will need time to digest the material and pull meaningful questions together. If you can't put links, can you provide the source and dates so I can find the articles.
Kathy Forgot, the other reason I don't get why neuro would sugar coat this discussion is he is a big proponent of lifestyle changes and activities that promote brain health.
He has no problem telling me that while Sudoku is ok, after you understands the patterns on difficult level, it isn't challenging enough. That I need to do things that challenge more than one sense at a time. And that I need to raise cardio level.
I don't get why he would shy away from the conversation, and frankly, pisses me off that he would.
jreagan70
This is the kind of overly-technical-to-the-point-of-being-nonsensical answer doctors give when they don't really want to answer the question. Hydration? Really?
While it may be true that it isn't possible to calculate the exact percentage of brain atrophy from an MRI, and that estimating atrophy may be different for the different neurodegenerative diseases, the medical literature contains ample credible research and articles about how brain atrophy can be and is estimated via MRI. The new heightened interest in brain atrophy and MS was spurred in part by existing MRI evidence.
Even someone who has never seen an MRI before can compare the MRI of a healthy brain and the MRI of a person with advanced Alzheimer's disease and see unmistakably how badly the brain has atrophied. Simple comparison against anatomical landmarks gives clues about atrophy in cases that aren't as obvious.
And for a neurologist to go further and say that brain volume can't be estimated by MRI not only disregards the existing evidence and scientific support for it, but is completely insulting to the neuroscientists who have been working with brain atrophy in neurodegenerative diseases and improving technology for measuring it since the MRI first began being used in commercial medicine some 30 years ago.
Brain atrophy is not a conversation a lot of neurologists want to have with their patients. Currently there's nothing that can be done to reverse existing atrophy. Talking about that can be a depressing conversation that isn't worth the amount of time it will take, so there's little constructive point in going there.
Until neurologists are ready to have meaningful conversations about medication and lifestyle choices for preventing brain atrophy and preserving brain health, a lot of them are going to shut down conversations with this kind of non-answer.
Kathy
Can you provide me a link I can look at that discusses MRI capability related to MS brain atrophy? I have asked 3 neuros, 2 of whom I respect highly, and was told that since volume is missing part of puzzle, it is not really a good measure, that pieces of the picture are missing.
I want to have an intelligent and meaningful conversation on this with my neuro again and would like to have scientific facts with me. But want to go my due diligence in understanding articles.
When atrophy shows on MRI, does it have to be significant? Is the issue that when atrophy shows, can't tie into cognitive dysfunction that it may cause?
I am not obsessing over it, but want to make sure my neuro is being straight with me. I don't understand why he would sugarcoat it, as he doesnt with other areas where no answers may be available. Not being straight will make me question so much more.
Thanks
Carolinemf
I'm afraid that I have to agree to a certain extent with JReagan.
I can quite clearly see the progression of atrophy on the multiple mri scans we compared- taken every 6 months over roughly 4 years. It doesn't require micro measurement, it is visible to the naked eye. I also don't believe that the extent of atrophy can be dismissed by or attributed to the possibility of something like needing to hydrate.
The one thing that I have learned while that researching this subject and it's link to MS and symptoms, DMTs and presentation is that treatments - like Tysabri- can cause noticeable atrophy because they reduce the inflammation of the brain and spinal cord and this in turn reduces the accompanying swelling that is present in the inflamed areas.
A lot of clinical research is now being directed at 'Grey matter damage' as possibly contributing just as much to ms progression as lesions so more accurate testing will probably be developed into the future .
I'm not positive what is causing my worrying Dementia like symptoms- I'm still exploring all possible contributors. It's possible the Tys has slowed my progression (from what it may have been) and that is what is visible on the mri's and my cog issues etc are just to be expected.
I hadn't heard atrophy mentioned as a part of ms until this year and then mostly because of my lesions being considered stable , yet showing considerable progression with symptoms.
It would be interesting to see if I ceased tysabri for a while would any swelling return and so lessen atrophy.
I'm still waiting for my neuro to email me info the he said outlines benefits to atrophy and cog fog attributed to being treated by Lemtrada. I haven't found anything showing any benefit to these from any treatment.
Thanks and all the best everyone.
jreagan70
Echo2099
He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible.
This is the kind of overly-technical-to-the-point-of-being-nonsensical answer doctors give when they don't really want to answer the question. Hydration? Really?
While it may be true that it isn't possible to calculate the exact percentage of brain atrophy from an MRI, and that estimating atrophy may be different for the different neurodegenerative diseases, the medical literature contains ample credible research and articles about how brain atrophy can be and is estimated via MRI. The new heightened interest in brain atrophy and MS was spurred in part by existing MRI evidence.
Even someone who has never seen an MRI before can compare the MRI of a healthy brain and the MRI of a person with advanced Alzheimer's disease and see unmistakably how badly the brain has atrophied. Simple comparison against anatomical landmarks gives clues about atrophy in cases that aren't as obvious.
And for a neurologist to go further and say that brain volume can't be estimated by MRI not only disregards the existing evidence and scientific support for it, but is completely insulting to the neuroscientists who have been working with brain atrophy in neurodegenerative diseases and improving technology for measuring it since the MRI first began being used in commercial medicine some 30 years ago.
Brain atrophy is not a conversation a lot of neurologists want to have with their patients. Currently there's nothing that can be done to reverse existing atrophy. Talking about that can be a depressing conversation that isn't worth the amount of time it will take, so there's little constructive point in going there.
Until neurologists are ready to have meaningful conversations about medication and lifestyle choices for preventing brain atrophy and preserving brain health, a lot of them are going to shut down conversations with this kind of non-answer.
Kathy
Echo2099
I had an appointment with my neuro a couple of weeks ago. I asked him about brain atrophy. He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible.
>Thanks for posting. My neuro said similar and that you can't tell volume by current MRI. Feel better reading this that he wasn't just trying to shield me from bad news or something!
Echo2099
I had an appointment with my neuro a couple of weeks ago. I asked him about brain atrophy. He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible
Sounds like a lot of variables can effect brain size.
Original post (approx - can't retrieve the rest)
Have been feeling like a confused little old lady for a while now probably years . saw neuro in June and he said atrophy is problem . never had that mentioned before etc etc
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