Aa
Follow up MRI Results
New report shows more damage/progression. Findings provided.
I posted last week about how to get a more detailed radiologist's report. I took the suggestions that were offered and yucked it up with the tech.
IT WORKED!!! But I am also bummed with the results and hope a dx comes sooner rather than later. Talked to son today and was very distracted by the news and told him why. He asked if MS/lesions could cause aggressive behavior (that's how he sees me at times). Looks like it could after doing some research.
Definitely more detailed, and yes, changes have taken place over the past six months:
“There are several small foci of increased FLAIR signal seen in the periventricular and subcortical white matter bilaterally. Compared to the prior study, 1 of these lesions in the left frontal white matter has increased in size now measuring 10 mm compared to the previous measurement of 7 mm. This also appears more intense. There is a new tiny focus seen toward the vertex in the left frontal lobe. No additional new foci are seen. A focus in the left frontal periventricular white matter appears lightly more intense. There is a small focus of stable increased FLAIR signal in the genu of the corpus callosum. There is not mid brain involvement. Diffusion-weighted sequences demonstrate no evidence for restricted water diffusion. There is no parenchymal mass or evidence of hemorrhage. The ventricles are normal in size and contour. Cerebral cortical sulci are unremarkable. There is no extra-axial collection.”
My next appt. with the neuro is supposed to be in February. Don't know if this will change things or not.
Given that the small lesion is 10 mm, I wonder what size the tiny lesion is? Doesn't really sound like a typical radiologist terminology.
Audrey
I posted last week about how to get a more detailed radiologist's report. I took the suggestions that were offered and yucked it up with the tech.
IT WORKED!!! But I am also bummed with the results and hope a dx comes sooner rather than later. Talked to son today and was very distracted by the news and told him why. He asked if MS/lesions could cause aggressive behavior (that's how he sees me at times). Looks like it could after doing some research.
Definitely more detailed, and yes, changes have taken place over the past six months:
“There are several small foci of increased FLAIR signal seen in the periventricular and subcortical white matter bilaterally. Compared to the prior study, 1 of these lesions in the left frontal white matter has increased in size now measuring 10 mm compared to the previous measurement of 7 mm. This also appears more intense. There is a new tiny focus seen toward the vertex in the left frontal lobe. No additional new foci are seen. A focus in the left frontal periventricular white matter appears lightly more intense. There is a small focus of stable increased FLAIR signal in the genu of the corpus callosum. There is not mid brain involvement. Diffusion-weighted sequences demonstrate no evidence for restricted water diffusion. There is no parenchymal mass or evidence of hemorrhage. The ventricles are normal in size and contour. Cerebral cortical sulci are unremarkable. There is no extra-axial collection.”
My next appt. with the neuro is supposed to be in February. Don't know if this will change things or not.
Given that the small lesion is 10 mm, I wonder what size the tiny lesion is? Doesn't really sound like a typical radiologist terminology.
Audrey
Should have said I have at least 14 lesions now. Don't know how many are 3 mm or larger.
Audrey
If you're not diagnosed, I would say that this should change things. I would call the neurologist's office and ask if your neurologist would like to see you earlier because of the changes seen by your radiologist.
Here's my thinking:
1) Lesions in the corpus callosum
2) Increase in size of at least one of your lesions
3) New lesions
4) More than 9 lesions
5) Symptoms
You've also more than likely have had other diseases ruled out by now.
How long have you been undiagnosed? This should changed things.
Here's my thinking:
1) Lesions in the corpus callosum
2) Increase in size of at least one of your lesions
3) New lesions
4) More than 9 lesions
5) Symptoms
You've also more than likely have had other diseases ruled out by now.
How long have you been undiagnosed? This should changed things.
I am too new to MS to answer your questions but wanted to add...My neuro told me it wasn't about how many lesions I had but where they are located. In other words I could have lesions that give me no trouble but just one that could be the major cause of problems. I know I have them on my brain stem, brain and spine but beyond that? I don't want to know...I guess if a problem presents itself then my neuro will know...In fact, sometimes we have problems and the lesion hasn't shown yet!!! I try hard to stay away from knowing too much because sure enough, if she told me I had one here or there and this or that should be happening....I would be sure to REACT...lol...I am a big baby!!
The location is key (along with the size, shape, increase in size, increase in number). Unfortunately, many neuros count the number and don't consider these facts. You are NOT a big baby. This is our brain that they're looking at--not our tonsils! :)
Deb
Deb
Your MRI looks a little like mine!
Well, personality changes are certainly possible with MS. I have a short fuse these days - I have no patience and get angry at the drop of a hat, especially if I'm contradicted.
Well, personality changes are certainly possible with MS. I have a short fuse these days - I have no patience and get angry at the drop of a hat, especially if I'm contradicted.
How dismaying.....I guess we have to be careful what we ask for.
When you are trying to get a diagnosis you DO want to know if the lesions are increasing. So, 14+ are very significant. I don't know if I spoke up on the prior MRI, but lesions in the corpus callosum are extremely significant - a hallmark of MS. Although a few other things can cause lesions there, MS is #'s 1, 2 and 3 on the list.
This MRI shows dissemination in time very well. As for space, what are your symptoms?
Again, what has your spinal MRI shown?
MS can certainly cause personality changes. And if not that, I find that I am more irritable with fatigue and heat. And I have been known to bite someone's head off merely misunderstanding what they were saying - I mean, I was being extremely thin-skinned. A lot of people have mentioned that they were more likely to be irritable. That certainly could be mistaken for aggressiveness.
Now, what exactly is keeping you from a diagnosis?
I need to review your history and what abnormalities you have on exam. Can you point me to those posts?
Quix
When you are trying to get a diagnosis you DO want to know if the lesions are increasing. So, 14+ are very significant. I don't know if I spoke up on the prior MRI, but lesions in the corpus callosum are extremely significant - a hallmark of MS. Although a few other things can cause lesions there, MS is #'s 1, 2 and 3 on the list.
This MRI shows dissemination in time very well. As for space, what are your symptoms?
Again, what has your spinal MRI shown?
MS can certainly cause personality changes. And if not that, I find that I am more irritable with fatigue and heat. And I have been known to bite someone's head off merely misunderstanding what they were saying - I mean, I was being extremely thin-skinned. A lot of people have mentioned that they were more likely to be irritable. That certainly could be mistaken for aggressiveness.
Now, what exactly is keeping you from a diagnosis?
I need to review your history and what abnormalities you have on exam. Can you point me to those posts?
Quix
Just curious: what other things can cause lesions on the corpus callosum?
And my last MRI showed no discernable change from one two years ago, yet I am infinately worse than I was then. I totally do NOT get it....
Cheers
And my last MRI showed no discernable change from one two years ago, yet I am infinately worse than I was then. I totally do NOT get it....
Cheers
Someone came up with a list last year and I would have to look for it. Mostly they were zebras.
q
q
I have a timeline of my sx posted in my journal.
First attack was while driving. Felt so light headed, afraid of passing out, could not judge speed or distance while driving on highway.
Sx include, but are not limited to:
dizziness/light headed often combined with blurred or double vision
balance problems...can start to tip in any direction, have also fallen
headaches
tremors
clonus in both ankles, more severe in R
numbness & tingling in R hand
paresethia- so many different kinds feet, legs, face scalp
muscles- cramping, spasms/fluttering
constipation
impaired memory
language difficulties, both verbal and written
fatigue
MRI of spine was clear for spinal lesions, but did indicate DDD in C spine. CSF anaylsis all clear. Major MS mimics have been ruled out with CSF analysis and comprehensive panel of blood tests ( no Lyme, lupus, B-12,etc).
My emotions have taken over my ability to be strategic right now, which is not at all like me.
Audrey
First attack was while driving. Felt so light headed, afraid of passing out, could not judge speed or distance while driving on highway.
Sx include, but are not limited to:
dizziness/light headed often combined with blurred or double vision
balance problems...can start to tip in any direction, have also fallen
headaches
tremors
clonus in both ankles, more severe in R
numbness & tingling in R hand
paresethia- so many different kinds feet, legs, face scalp
muscles- cramping, spasms/fluttering
constipation
impaired memory
language difficulties, both verbal and written
fatigue
MRI of spine was clear for spinal lesions, but did indicate DDD in C spine. CSF anaylsis all clear. Major MS mimics have been ruled out with CSF analysis and comprehensive panel of blood tests ( no Lyme, lupus, B-12,etc).
My emotions have taken over my ability to be strategic right now, which is not at all like me.
Audrey
Audrey, your symtoms and test results mirror mine......very interesting stuff. Do you get migraines, classic and / or atypical as well? I do, plus some possible seizure thing happening as well.
marvellous stuff, isn't it!!
Jemm
PS LOVE LOVE LOVE Audrey Hepburn!
marvellous stuff, isn't it!!
Jemm
PS LOVE LOVE LOVE Audrey Hepburn!
Love Audrey Hepburn too. Beyond her physical beauty and grace, she was a remarkable woman. I'm blonde and look nothing like her; have been compared to Princess Diana and Terri Garr in my younger years.
Forgot to add L'Hermittes sign to my sx.
As for migraines, I did have several years in my 20's while on the pill where I did get classic migraines. Went off pill with superficial blood clots. Have had several migraines, both classic and atypical in the past two years.
Seizure stuff, IDK. Would not even know how to begin to answer that.
Audrey
Forgot to add L'Hermittes sign to my sx.
As for migraines, I did have several years in my 20's while on the pill where I did get classic migraines. Went off pill with superficial blood clots. Have had several migraines, both classic and atypical in the past two years.
Seizure stuff, IDK. Would not even know how to begin to answer that.
Audrey
This whole situation is why I really don't understand this MS diagnosis malarky.
Based on the way my neuro diagnosed my MS, there'd be a significant interest in the number of lesions (I had >9) corpus callosum lesions (I had none) and the enhancing periventricular lesions (I had 1), especially as the previous MRI indicated 'an appearence of demylinating disease'. If you then couple this with your symptoms, then the arrow seems to point in a similar direction.
Also,it might be an idea to ask for another c-spine scan if you're experiencing L'Hermittes as I think this is caused by lesions in the spinal cord (which frustratingly are often hard to detect on an MRI, as per the neuro when explaining why somethings are detected only in a follow up scan even if they were there first time around)
Anywas, this is where my confusion comes... how can I get a diagnosis with physical symptoms which are seemingly so mild in comparison with what they could be, and yet people who seem to show the 'more classic' signs battle for years?
I've put this down to having spinal cord lesions which enable me to fulfil the McDonald criteria by the book, but somehow this isn't very satisfying...
I know neuros etc don't want to misdiagnose, but still - is there a general lack of MS knowledge amongst neurologists, or do I just have absolutely no idea of the difficulties facing them in making a dx?
Anyway, I'll stop waffling now. Audrey, I hope your neuro comes up with some good answers for you - knowing is so much better than not knowing.
Jep, sending positive thoughts across the Atlantic.
Based on the way my neuro diagnosed my MS, there'd be a significant interest in the number of lesions (I had >9) corpus callosum lesions (I had none) and the enhancing periventricular lesions (I had 1), especially as the previous MRI indicated 'an appearence of demylinating disease'. If you then couple this with your symptoms, then the arrow seems to point in a similar direction.
Also,it might be an idea to ask for another c-spine scan if you're experiencing L'Hermittes as I think this is caused by lesions in the spinal cord (which frustratingly are often hard to detect on an MRI, as per the neuro when explaining why somethings are detected only in a follow up scan even if they were there first time around)
Anywas, this is where my confusion comes... how can I get a diagnosis with physical symptoms which are seemingly so mild in comparison with what they could be, and yet people who seem to show the 'more classic' signs battle for years?
I've put this down to having spinal cord lesions which enable me to fulfil the McDonald criteria by the book, but somehow this isn't very satisfying...
I know neuros etc don't want to misdiagnose, but still - is there a general lack of MS knowledge amongst neurologists, or do I just have absolutely no idea of the difficulties facing them in making a dx?
Anyway, I'll stop waffling now. Audrey, I hope your neuro comes up with some good answers for you - knowing is so much better than not knowing.
Jep, sending positive thoughts across the Atlantic.
Your confusion mirrors mine.
For anyone who cares to look, I do have images and prior MRI reports posted on my profile under pictures.
Where I stand now is trying to figure how to proceed. It would appear that I have enough in the basket to fit diagnostic criteria, yet my new neuro (as of Mar 2010) has already told me that my lesions are not of the classic shape or location for MS. That is why I posted slides from the MRI as well as the report. Can always post more if requested.
Need to strategize for next steps. How do I fully prepare for next visit with current neuro (who does specialize in MS/demyelinatining disease) and what are the signals that I should be open to consider seeking a second opinion?
Pardon any and all typos/grammatical errors...even spell check does not help.
Audrey
For anyone who cares to look, I do have images and prior MRI reports posted on my profile under pictures.
Where I stand now is trying to figure how to proceed. It would appear that I have enough in the basket to fit diagnostic criteria, yet my new neuro (as of Mar 2010) has already told me that my lesions are not of the classic shape or location for MS. That is why I posted slides from the MRI as well as the report. Can always post more if requested.
Need to strategize for next steps. How do I fully prepare for next visit with current neuro (who does specialize in MS/demyelinatining disease) and what are the signals that I should be open to consider seeking a second opinion?
Pardon any and all typos/grammatical errors...even spell check does not help.
Audrey
ARRRGGGGH!!!! If the clinical picture fits...
remember that the clinical picture is the symptom history plus the abnormalities on exam
then the MRI ONLY has to have lesions that are "CONSISTENT WITH" MS - not classic for it. That is where your neuro is missing the boat. The question to ask is "an we see lesions like this in MS?" If the answer is "yes" then the MRI supports a diagnosis of MS if the proper rule-outs have been done.
Your neuro is waiting for unnecessary evidence. Also, since your MRI is obviously showing a greater lesion burden, then you can be placed on a DMD IF the likelihood is high enough.
The questions I would want to know are"
1) If this is not MS, then what is it most likely to be? Have you ruled out the likely mimics?
2) Isn't MS a diagnosis of exclusion? Aren't we left with MS at this point?
3) Aren't the lesions I have "consistent with MS, that is couldn't they be seen in someone with MS? Especially given the lesions in the corpus callosum.
and finally the cheat that any of you all can use:
4) I have a family friend who is a phsyician with MS (That would be me. Your family likes me okay, don't they?) says that there is enough info now to start me on a DMD, even though it may not be a slam dunk diagnosis, and that this might be the preferred route to take because the meds work better the earlier they are used.
Then (if this is true for you) tell him that you would rather take the chance and be treated than risk more time passing and more deteriortion while waiting for the perfect lesion.
We call your doctor Dr. On The Fence. They lack a deep understanding of MS and also lack confidence.
4) (IF this is true for you) If you are close to 80 to 90% sure this is MS, I would rather take the chance and be on a DMD rather than continue to deteriorate waiting for the "perfect lesion".
Let him know the role you would like to take in this uncertainty.
If he hems and haws about "well, you might have something else." then you ask what signs point to something else. then ask if everything has been checked to look for that something else.
This is one approach to let your doc know that you are somewhat knowledgeable about MS and that you have a preference about how much chance to take. It is only a suggestion.
Quix
remember that the clinical picture is the symptom history plus the abnormalities on exam
then the MRI ONLY has to have lesions that are "CONSISTENT WITH" MS - not classic for it. That is where your neuro is missing the boat. The question to ask is "an we see lesions like this in MS?" If the answer is "yes" then the MRI supports a diagnosis of MS if the proper rule-outs have been done.
Your neuro is waiting for unnecessary evidence. Also, since your MRI is obviously showing a greater lesion burden, then you can be placed on a DMD IF the likelihood is high enough.
The questions I would want to know are"
1) If this is not MS, then what is it most likely to be? Have you ruled out the likely mimics?
2) Isn't MS a diagnosis of exclusion? Aren't we left with MS at this point?
3) Aren't the lesions I have "consistent with MS, that is couldn't they be seen in someone with MS? Especially given the lesions in the corpus callosum.
and finally the cheat that any of you all can use:
4) I have a family friend who is a phsyician with MS (That would be me. Your family likes me okay, don't they?) says that there is enough info now to start me on a DMD, even though it may not be a slam dunk diagnosis, and that this might be the preferred route to take because the meds work better the earlier they are used.
Then (if this is true for you) tell him that you would rather take the chance and be treated than risk more time passing and more deteriortion while waiting for the perfect lesion.
We call your doctor Dr. On The Fence. They lack a deep understanding of MS and also lack confidence.
4) (IF this is true for you) If you are close to 80 to 90% sure this is MS, I would rather take the chance and be on a DMD rather than continue to deteriorate waiting for the "perfect lesion".
Let him know the role you would like to take in this uncertainty.
If he hems and haws about "well, you might have something else." then you ask what signs point to something else. then ask if everything has been checked to look for that something else.
This is one approach to let your doc know that you are somewhat knowledgeable about MS and that you have a preference about how much chance to take. It is only a suggestion.
Quix
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