Aa
Diagnostic question(s) from a newbie
I was just diagnosed with MS by a wonderful, highly respected MS specialist earlier this week. He was extremely thorough and I trust his judgment, but I still have a lot of questions. Here's my situation in short:
I was given an MRI in 2007 due to recurrent migraines, and the results showed the presence of about 12 lesions. The radiologist interpreted these as "possibly due to migraines," but did not rule out MS. My neurologist at the time was totally not alarmed, most likely because I had no symptoms, and said it was fine but I should follow up in about 6 months.
I didn't follow up until last November, when I experienced a mild spell of vertigo that lasted about two weeks. This was in addition to a few other weird, but also very mild, symptoms that I had been writing off - a little bit more forgetfulness, a little more clumsiness, some weird eye stuff like light flashes that I had attributed to my generally bad eyesight, and very slight weakness in my left hand. So I was sent off for another MRI, which was interpreted this time as indicating "moderate demyelinating disease of any etiology, but suggestive of MS." Here's the kicker, though - there is no significant change between the scans! Just a different reading radiologist.
My scans and my tiny cluster of symptoms, plus two neurological exams (which showed some nystagmus & hyperactive reflexes in my knees & ankles) were enough for a diagnosis. But I am wondering...
1) How is it possible for two virtually identical scans to be interpreted so differently by two radiologists?
2) If my scans have not changed perceptibly, how do we know that my lesions are indicative of MS and not just scar tissue from a one-time event?
3) I kind of know the answer to this, but is it normal to have an increase in symptoms without changes on the MRI?
4) As a second part of the above question, do some people have an MS diagnosis even without ANY additional MRI changes? Or is it inevitable that more lesions will appear over time?
I have lots more questions, too, but these are the ones I am really wrestling with right now. I will see my doctor again next week and will ask him, but any insight in the meantime would be much appreciated.
Thanks so much!
Shannon
I was given an MRI in 2007 due to recurrent migraines, and the results showed the presence of about 12 lesions. The radiologist interpreted these as "possibly due to migraines," but did not rule out MS. My neurologist at the time was totally not alarmed, most likely because I had no symptoms, and said it was fine but I should follow up in about 6 months.
I didn't follow up until last November, when I experienced a mild spell of vertigo that lasted about two weeks. This was in addition to a few other weird, but also very mild, symptoms that I had been writing off - a little bit more forgetfulness, a little more clumsiness, some weird eye stuff like light flashes that I had attributed to my generally bad eyesight, and very slight weakness in my left hand. So I was sent off for another MRI, which was interpreted this time as indicating "moderate demyelinating disease of any etiology, but suggestive of MS." Here's the kicker, though - there is no significant change between the scans! Just a different reading radiologist.
My scans and my tiny cluster of symptoms, plus two neurological exams (which showed some nystagmus & hyperactive reflexes in my knees & ankles) were enough for a diagnosis. But I am wondering...
1) How is it possible for two virtually identical scans to be interpreted so differently by two radiologists?
2) If my scans have not changed perceptibly, how do we know that my lesions are indicative of MS and not just scar tissue from a one-time event?
3) I kind of know the answer to this, but is it normal to have an increase in symptoms without changes on the MRI?
4) As a second part of the above question, do some people have an MS diagnosis even without ANY additional MRI changes? Or is it inevitable that more lesions will appear over time?
I have lots more questions, too, but these are the ones I am really wrestling with right now. I will see my doctor again next week and will ask him, but any insight in the meantime would be much appreciated.
Thanks so much!
Shannon
I see "subcortical" lesions mentioned. Is that the same as "deep white matter"? (My small lesions were noted to be in the "deep white matter", IIRC.)
Hi Quix,
You helped a few weeks back with Lulu and twopack with my question of what peritrigonal meant...I'll re-post my question in new thread. sorry
Jib Jen
You helped a few weeks back with Lulu and twopack with my question of what peritrigonal meant...I'll re-post my question in new thread. sorry
Jib Jen
Just for giggles you can check out
If you want to know more about lesions and MRIs, check out
http://www.radiologyassistant.nl/en/4556dea65db62#p4594f74ccbf19
this wonderful site to train radiologists in the Netherlands has a whole section of MRI pictures on differential diagnosis to MS.
Yes, there is a difference between lesions but it takes a very trained eye to see that difference.
be well,
Lulu
If you want to know more about lesions and MRIs, check out
http://www.radiologyassistant.nl/en/4556dea65db62#p4594f74ccbf19
this wonderful site to train radiologists in the Netherlands has a whole section of MRI pictures on differential diagnosis to MS.
Yes, there is a difference between lesions but it takes a very trained eye to see that difference.
be well,
Lulu
Thanks for the info, Quix. You provided a great breakdown of the differences that makes sense to me.
I have also heard people say that they were told dozens (!!) of lesions are consistent with migraine. I think that is why it stood out so much to me when I was told that more than 1-2 was suspicious for something OTHER than migraine.
Here's a little summary of some of the research I've been encountering: http://ms.about.com/od/signssymptoms/a/headache_gen.htm
I thought it was especially interesting that studies have found that 58% of people with MS have chronic headache, as compared to 16.5% of the general population.
Yes, I also really wish this wasn't happening to us, or to anyone. I'm getting my Ph.D. in psychology, and I think that reading as much as I can is just familiar and comforting for me right now. So keep the info coming, folks!!! :)
I have also heard people say that they were told dozens (!!) of lesions are consistent with migraine. I think that is why it stood out so much to me when I was told that more than 1-2 was suspicious for something OTHER than migraine.
Here's a little summary of some of the research I've been encountering: http://ms.about.com/od/signssymptoms/a/headache_gen.htm
I thought it was especially interesting that studies have found that 58% of people with MS have chronic headache, as compared to 16.5% of the general population.
Yes, I also really wish this wasn't happening to us, or to anyone. I'm getting my Ph.D. in psychology, and I think that reading as much as I can is just familiar and comforting for me right now. So keep the info coming, folks!!! :)
You actually gave a good description of the ways they can be differentiated. Migraine lesions generally are punctate and more subcortical - the general location of vascular lesions. The same is true of those from high BP and diabetes.
In MS they are expected to be larger, classically ovoid with the larger axis perpendicular to the ventricles of the brain, The edges are smooth and usually well-demarcated (depending on the resolution of the MRI) and the centers are homogeneous.
I am not enough of an expert to know what the usual numbers for migraine disease are. We have had members here told that dozens of lesions were consisten with migraine disease(??).
If many lesions are located peri (around) ventricularly then that is more "consistent with MS." Other common places are the cerebellum, the corpus callosum, the spinal cord. It is all a rather indirect science. The WHOLE picture of the patient's problems put together with the findings on exam and the MRI has to be reconciled, something your neuro's seem to be doing. - you are so lucky in this.
I'm not aware of the migraine/MS data you are speaking of.
It is fascinating. I just wish it weren't happening to us. :((
Quix
In MS they are expected to be larger, classically ovoid with the larger axis perpendicular to the ventricles of the brain, The edges are smooth and usually well-demarcated (depending on the resolution of the MRI) and the centers are homogeneous.
I am not enough of an expert to know what the usual numbers for migraine disease are. We have had members here told that dozens of lesions were consisten with migraine disease(??).
If many lesions are located peri (around) ventricularly then that is more "consistent with MS." Other common places are the cerebellum, the corpus callosum, the spinal cord. It is all a rather indirect science. The WHOLE picture of the patient's problems put together with the findings on exam and the MRI has to be reconciled, something your neuro's seem to be doing. - you are so lucky in this.
I'm not aware of the migraine/MS data you are speaking of.
It is fascinating. I just wish it weren't happening to us. :((
Quix
Do you know if there is a clear way that areas of demyelination are differentiated from lesions caused by migraine on the MRI itself?
The two neurologists that I have seen recently both felt like the lesions on my MRIs were "clearly not" caused by migraines. In fact, they both used similar language...something along the lines of: "with migraines, we allow for one or two tiny (punctate) lesions, but when there are significantly more lesions that that we start to think MS." They mentioned size and location as factors, as well. But I actually have not been able to find much documentation regarding the objective differences between migraine or vascular lesions and demyelinating lesions. However, in my search I did find some really thought-provoking information regarding the interesting correlations between migraines and MS. Some of that research actually makes me wonder whether many people who have lesions "caused by migraines" may actually be presenting with early signs of a demyelinating disease?
There is so much to learn about this! It is such a strange and fascinating world. :)
The two neurologists that I have seen recently both felt like the lesions on my MRIs were "clearly not" caused by migraines. In fact, they both used similar language...something along the lines of: "with migraines, we allow for one or two tiny (punctate) lesions, but when there are significantly more lesions that that we start to think MS." They mentioned size and location as factors, as well. But I actually have not been able to find much documentation regarding the objective differences between migraine or vascular lesions and demyelinating lesions. However, in my search I did find some really thought-provoking information regarding the interesting correlations between migraines and MS. Some of that research actually makes me wonder whether many people who have lesions "caused by migraines" may actually be presenting with early signs of a demyelinating disease?
There is so much to learn about this! It is such a strange and fascinating world. :)
Wow. WOW. Amazing replies to my questions. Thank you so much, everyone! I am going to reread and process the posts before I respond fully.
And Quix - I am so grateful for your incredibly informative and helpful post. THANK YOU!
And Quix - I am so grateful for your incredibly informative and helpful post. THANK YOU!
Have I ever told you what I think of your story?? Noodlebrain here can't remember.
If you want to post your story again in a new thread, I'll let your current neuro have it. He needs to grow a pair!
Quix
If you want to post your story again in a new thread, I'll let your current neuro have it. He needs to grow a pair!
Quix
Hi and Welcome to the forum! You have asked some very good questions and gotten some great answers. I'm going to give my answers, even though it will repeat some of what you have said.
1) First, when the first MRI was done, it was likely just the regular work up one gets for the inital look see for headaches. It behooves any doc to be sure first that headaches do not reflect something more serious. That MRI should the 12 lesions. Yes, migraines can and do cause lesions. But the lesions of migraines do not have serious neurological symptoms accompanying them. Headaches, yes; neurologic symptoms, no - not unless they have actually been having mini-stokes.
So, the radiologist would have had access to your sex, age and whatever info the ordering doctor had put on the requisition. It is usually brief and probably said "Migraines". The radiologist saw the 12 lesions. If these lesions were mostly subcortical, then they would have been "consistent with" migraine disease, but the radiologist was being thorough when he remarked that the lesions might also represent a demyelinating process like MS. The neurologist knows that you didn't have more neurologic symptoms and accepted this - rightly so.
So in the intervening couple years, you started having other stuff that we all might write off as age - actually inappropriate unless you are pushing 70 - but we do it anyway. The vertigo (common in people), flashes of light (actually not a factor in garden variety bad eyesight) and weakness of your hand (are you under 80? - should be happenin'). So a new MRI shows the same lesions. But, now we have a whole new framework to evaluate both MRIs in. The new neurologist was not constrained by the history of only migraines. Perhaps we can fault the first rad for being swayed toward migrain as the likely cause of the lesions, but it sounds like he opened the door to consider MS.
In 2007 you had what was very likely a type of early MS situation called Radiographically Isolated Syndrome. This is where the MRI is showing the lesions of MS, but the patient has no symptoms. Most docs will say that you can't diagnose MS without the symptoms. We understand this ONLY in retrospect, though, now that you have had symptoms totally consistent with MS.
The radiologists had different "indications" for doing the imaging. Hindsight is 20/20.
2) In making a diagnosis the neurologist must account for everything they know. In this case, he now has to account for new onset of demyelinating-type symptoms. If these lesions had been caused by a one-time event - the symptoms would have occurred at the time of the event and would have been present since then. This did not occur. We know that many, many people's MS has been discovered by doing an MRI for other reasons like working up headaches or head trauma. The lesions are found and there is nothing to associate them with. The symptoms are usually not that far behind.
We had a member here who was an MRI tech. Her hospital got a brand new, super keen MRI machine and she was allowed practice on it. She persuaded her fiance to be a guinea pig and ran one on him. He had a brainful of lesions - no real symptoms. Within weeks he began having full-fledged problems. Weird, but true.
We have a current member who started with the Radiologically Isolated Syndrome, began having a few minor symptoms and is now diagnosed and having doubts about how it all came about. But, this is one of the known ways MS can present.
3) I would say that is is common to have an increase in symptoms and no increase in lesions to account for them. There is an often a remarkable disconnect between symptoms and lesions. There are often symptoms for which no lesions can be found and vice versa. There are lesions, but the person does not have a specific symptom that seems to be caused by that lesion. We have a Health Page that talks about this:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
We often get angry with the dunderheaded neurologists that try to match up the two things and then try to say that MS is or isn't active depending on the results. MS is NOT that predictable.
4) Yes, many of us have been diagnosed with a MRI that has not yet shown changes. I am one. My MRI showed only a single spot on my brain which was deemed normal for my advanced age of 53. Two years later - and a few more symptoms - it was the same. My MS Specialist felt it was all he needed for a 90%+ confidence that I had MS - well enough to begin treatment. To be thorough, thugh, he sent me to a better machine for a better look at my spine. I had six lesions that had not shown up on the prior lower resolution scan.
The good neuro, and it sounds like you have one, does not worhip the MRI as if it is "All Revealing". They know that it is just one of the tools they use in making the diagnosis.
BTW - your physical exam showed damage to the CNS in two different spots. The hyperactive reflexes show unequivocably that you have a lesion in your spinal cord. The nystagmus indicates that you likely have another in your brainstem. That combines with your history of weakness in the hand (a third location) and some cognitive stuff.
It is probably inevitable (an oxymoron? lol) that you will have more lesions develop. Maybe not. A certain number of people go through their entire life with exceptionally mild symptoms and few lesions. Most have a rougher course than than and show progression in the disease and the number of lesions.
If you are into some long (not so heavy, but long) reading. I tried to explain the McDonald Criteria in detail. These are one of the paradigms used to diagnose MS. You fulfill them if you have had at least two different bouts of symptoms. You have at least two sites in your exam that show signs that the central nervous system ahs been damaged in two or more areas and you have lesions that are "consistent with" MS.
I assume your neuro has sent the many blood tests that look for signs pointing to the many mimics of MS. This is mandatory before the Dx of MS can be given.
Here is the Health Page that describes how the McDonald Criteria are used. As you near the bottom of it you will see a list of "scenarios". You need go no further than "Scenario I".
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
I hope this, along with everybody else's comments, helpful.
Quix - Founder and President of the support group for people who talk too much
ON-AND-ON ANON
1) First, when the first MRI was done, it was likely just the regular work up one gets for the inital look see for headaches. It behooves any doc to be sure first that headaches do not reflect something more serious. That MRI should the 12 lesions. Yes, migraines can and do cause lesions. But the lesions of migraines do not have serious neurological symptoms accompanying them. Headaches, yes; neurologic symptoms, no - not unless they have actually been having mini-stokes.
So, the radiologist would have had access to your sex, age and whatever info the ordering doctor had put on the requisition. It is usually brief and probably said "Migraines". The radiologist saw the 12 lesions. If these lesions were mostly subcortical, then they would have been "consistent with" migraine disease, but the radiologist was being thorough when he remarked that the lesions might also represent a demyelinating process like MS. The neurologist knows that you didn't have more neurologic symptoms and accepted this - rightly so.
So in the intervening couple years, you started having other stuff that we all might write off as age - actually inappropriate unless you are pushing 70 - but we do it anyway. The vertigo (common in people), flashes of light (actually not a factor in garden variety bad eyesight) and weakness of your hand (are you under 80? - should be happenin'). So a new MRI shows the same lesions. But, now we have a whole new framework to evaluate both MRIs in. The new neurologist was not constrained by the history of only migraines. Perhaps we can fault the first rad for being swayed toward migrain as the likely cause of the lesions, but it sounds like he opened the door to consider MS.
In 2007 you had what was very likely a type of early MS situation called Radiographically Isolated Syndrome. This is where the MRI is showing the lesions of MS, but the patient has no symptoms. Most docs will say that you can't diagnose MS without the symptoms. We understand this ONLY in retrospect, though, now that you have had symptoms totally consistent with MS.
The radiologists had different "indications" for doing the imaging. Hindsight is 20/20.
2) In making a diagnosis the neurologist must account for everything they know. In this case, he now has to account for new onset of demyelinating-type symptoms. If these lesions had been caused by a one-time event - the symptoms would have occurred at the time of the event and would have been present since then. This did not occur. We know that many, many people's MS has been discovered by doing an MRI for other reasons like working up headaches or head trauma. The lesions are found and there is nothing to associate them with. The symptoms are usually not that far behind.
We had a member here who was an MRI tech. Her hospital got a brand new, super keen MRI machine and she was allowed practice on it. She persuaded her fiance to be a guinea pig and ran one on him. He had a brainful of lesions - no real symptoms. Within weeks he began having full-fledged problems. Weird, but true.
We have a current member who started with the Radiologically Isolated Syndrome, began having a few minor symptoms and is now diagnosed and having doubts about how it all came about. But, this is one of the known ways MS can present.
3) I would say that is is common to have an increase in symptoms and no increase in lesions to account for them. There is an often a remarkable disconnect between symptoms and lesions. There are often symptoms for which no lesions can be found and vice versa. There are lesions, but the person does not have a specific symptom that seems to be caused by that lesion. We have a Health Page that talks about this:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
We often get angry with the dunderheaded neurologists that try to match up the two things and then try to say that MS is or isn't active depending on the results. MS is NOT that predictable.
4) Yes, many of us have been diagnosed with a MRI that has not yet shown changes. I am one. My MRI showed only a single spot on my brain which was deemed normal for my advanced age of 53. Two years later - and a few more symptoms - it was the same. My MS Specialist felt it was all he needed for a 90%+ confidence that I had MS - well enough to begin treatment. To be thorough, thugh, he sent me to a better machine for a better look at my spine. I had six lesions that had not shown up on the prior lower resolution scan.
The good neuro, and it sounds like you have one, does not worhip the MRI as if it is "All Revealing". They know that it is just one of the tools they use in making the diagnosis.
BTW - your physical exam showed damage to the CNS in two different spots. The hyperactive reflexes show unequivocably that you have a lesion in your spinal cord. The nystagmus indicates that you likely have another in your brainstem. That combines with your history of weakness in the hand (a third location) and some cognitive stuff.
It is probably inevitable (an oxymoron? lol) that you will have more lesions develop. Maybe not. A certain number of people go through their entire life with exceptionally mild symptoms and few lesions. Most have a rougher course than than and show progression in the disease and the number of lesions.
If you are into some long (not so heavy, but long) reading. I tried to explain the McDonald Criteria in detail. These are one of the paradigms used to diagnose MS. You fulfill them if you have had at least two different bouts of symptoms. You have at least two sites in your exam that show signs that the central nervous system ahs been damaged in two or more areas and you have lesions that are "consistent with" MS.
I assume your neuro has sent the many blood tests that look for signs pointing to the many mimics of MS. This is mandatory before the Dx of MS can be given.
Here is the Health Page that describes how the McDonald Criteria are used. As you near the bottom of it you will see a list of "scenarios". You need go no further than "Scenario I".
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
I hope this, along with everybody else's comments, helpful.
Quix - Founder and President of the support group for people who talk too much
ON-AND-ON ANON
Hello girls,
I hope you do not mind me popping in on this but noticed this question and would like to ask? I am currently over on the limbo forum.
My curent MRI shows 20 lesions..I started with symptoms in June 2009 of cognitive issues and problems with vision in left eye..my neurologist ordered MRI w/out contrast which came back with the 20 lesions.. I had done some research and asked about MS (not knowing my results) and he said funny you should say that...he was not ready to do LP....
In August I began getting numbness and tingling in left arm and fingers then some problems with stiffened left leg, fatigue and weakness...He still dismissed as migraines until I demanded more tests...
EMG was normal. EEG was normal - no epilepsy.
He sent me to physical therapist for perathesia and to rule out pinched nerve which he did.
December 2009 he sent me for another MRI to see what was going on he said if this WAS MS we would have to see what is going on in the brain..
(I had gotten copies of past results which all indicate possible demyelination, gliosis and one stated MS should be included in differential)
Anyway, went for MRI and nothing changed. same lesions, same size same location....
last appointment he said nothing new..I said so no MS? he said no but it is a wait and see kind of thing.....he wants to stop my migraine meds to see if there is a connection...
So does it mean that just because my lesions did not increase or change in size that it can not be MS or he just did not see any new ones because they we too small???
And what do you think wait and see would mean if he said NO anyway..
As I said ..sorry to butt in but I got a little confused and saw this post..
JibJen
Let me say now i do have migraines.....I'll get that out of the way..
I hope you do not mind me popping in on this but noticed this question and would like to ask? I am currently over on the limbo forum.
My curent MRI shows 20 lesions..I started with symptoms in June 2009 of cognitive issues and problems with vision in left eye..my neurologist ordered MRI w/out contrast which came back with the 20 lesions.. I had done some research and asked about MS (not knowing my results) and he said funny you should say that...he was not ready to do LP....
In August I began getting numbness and tingling in left arm and fingers then some problems with stiffened left leg, fatigue and weakness...He still dismissed as migraines until I demanded more tests...
EMG was normal. EEG was normal - no epilepsy.
He sent me to physical therapist for perathesia and to rule out pinched nerve which he did.
December 2009 he sent me for another MRI to see what was going on he said if this WAS MS we would have to see what is going on in the brain..
(I had gotten copies of past results which all indicate possible demyelination, gliosis and one stated MS should be included in differential)
Anyway, went for MRI and nothing changed. same lesions, same size same location....
last appointment he said nothing new..I said so no MS? he said no but it is a wait and see kind of thing.....he wants to stop my migraine meds to see if there is a connection...
So does it mean that just because my lesions did not increase or change in size that it can not be MS or he just did not see any new ones because they we too small???
And what do you think wait and see would mean if he said NO anyway..
As I said ..sorry to butt in but I got a little confused and saw this post..
JibJen
Let me say now i do have migraines.....I'll get that out of the way..
Hi, I wrote you a long post, clicked to post, and got a blank page. I don't know if my post will ever show up, so I'll try again.
1) Radiologists differ in skill and opinion. I've had dozens of MRIs done for orthopedic reasons and have almost as many opinions as to what's wrong with my back, knees, etc. When I had my first brain MRI because of tremors, the neuro-radiologist read it's many lesions as "far and away most likely to be multiple sclerosis"
Three neurologists didn't agree, despite my relatively mild but worsening symptoms. A 3T MRI was so much clearer, but that was read as "essentially unchanged from prior imaging, and my 3rd neuro dismissed it. My fourth, bless him, diagnosed me on my first visit, 10/19/09. He even made comments to his intern like "how could they have missed that! It's clearly MS!"
I think it is important for a neurologist to read the MRIs themselves. If this is the same neurologist that you saw in 2007, then my guess would be that he didn't want to concern you since you weren't having symptoms at the time. The fact that he wanted to follow-up in 6 months instead of dismissing you or suggesting you follow-up in a year or more makes me wonder if he didn't suspect something more than migraines.
2) There are some areas of brain where lesions appear that are more consistent with MS, as well as the shape of the lesions. That combined with clinical exam and history is what makes the diagnosis, not just the MRI results alone, for the most part.
3) Not all lesions show up on MRI, so it is very possible to have an increase in symptoms with out noticeable changes on MRI.
4) Since I was diagnosed with "essentially unchanged" MRIs, I would say that that it is possible to be diagnosed with no apparent changes. My symptoms have gotten worse, and I've added several since those first tremors, but apparently there hasn't been much change in my 30 - 40 brain lesions. It seems that I've had relatively mild symptoms, possibly for 20 years, that were written off as other things. I think that with a diagnosis of MS, one can expect to get new lesions.
If you haven't checked out our Health Pages, there's a wealth of information there, many written by our resident MD, Quixotic1. I learned so much in the 2 years I've been visiting this forum.
I agree with Nancy that you are lucky to have found a neurologist that is willing and able to put the pieces together and diagnose you, so that you can start treatment. I finally found my current compassionate and caring MS specialist because of advice from Quix, and if I win the lottery (if I ever bought a ticket) I'd give her a million dollars!
Take care,
Kathy
1) Radiologists differ in skill and opinion. I've had dozens of MRIs done for orthopedic reasons and have almost as many opinions as to what's wrong with my back, knees, etc. When I had my first brain MRI because of tremors, the neuro-radiologist read it's many lesions as "far and away most likely to be multiple sclerosis"
Three neurologists didn't agree, despite my relatively mild but worsening symptoms. A 3T MRI was so much clearer, but that was read as "essentially unchanged from prior imaging, and my 3rd neuro dismissed it. My fourth, bless him, diagnosed me on my first visit, 10/19/09. He even made comments to his intern like "how could they have missed that! It's clearly MS!"
I think it is important for a neurologist to read the MRIs themselves. If this is the same neurologist that you saw in 2007, then my guess would be that he didn't want to concern you since you weren't having symptoms at the time. The fact that he wanted to follow-up in 6 months instead of dismissing you or suggesting you follow-up in a year or more makes me wonder if he didn't suspect something more than migraines.
2) There are some areas of brain where lesions appear that are more consistent with MS, as well as the shape of the lesions. That combined with clinical exam and history is what makes the diagnosis, not just the MRI results alone, for the most part.
3) Not all lesions show up on MRI, so it is very possible to have an increase in symptoms with out noticeable changes on MRI.
4) Since I was diagnosed with "essentially unchanged" MRIs, I would say that that it is possible to be diagnosed with no apparent changes. My symptoms have gotten worse, and I've added several since those first tremors, but apparently there hasn't been much change in my 30 - 40 brain lesions. It seems that I've had relatively mild symptoms, possibly for 20 years, that were written off as other things. I think that with a diagnosis of MS, one can expect to get new lesions.
If you haven't checked out our Health Pages, there's a wealth of information there, many written by our resident MD, Quixotic1. I learned so much in the 2 years I've been visiting this forum.
I agree with Nancy that you are lucky to have found a neurologist that is willing and able to put the pieces together and diagnose you, so that you can start treatment. I finally found my current compassionate and caring MS specialist because of advice from Quix, and if I win the lottery (if I ever bought a ticket) I'd give her a million dollars!
Take care,
Kathy
Hi Shannon,
I have not been diagnosed yet, but I do have the experience of two different neurologists coming up with two different interpretations of my MRI. Their interpretation was different form the radiologist interpretation! To be honest with you I am completely confused!! I am seeing a specialist in a week and I am sure her interpretation will be completely different from every one else!
I can't really answer your questions, but wanted to tell you that everyone here is so supportive and very informative. You will have a lot of support here.
I have not been diagnosed yet, but I do have the experience of two different neurologists coming up with two different interpretations of my MRI. Their interpretation was different form the radiologist interpretation! To be honest with you I am completely confused!! I am seeing a specialist in a week and I am sure her interpretation will be completely different from every one else!
I can't really answer your questions, but wanted to tell you that everyone here is so supportive and very informative. You will have a lot of support here.
I'll just address your question #1. I had the SAME SCAN interpreted differently on different occasions by the SAME RADIOLOGIST.
In 1999 I had an MRI to rule out an inner-ear tumor, following a sudden hearing loss. (I had already had some other weird symptoms--including what I now think was a relatively mild attack of bilateral trigeminal neuralgia--but hadn't told any doctor about them because they went away or were things I'd had for ages and thought were "normal" for me.)
The radiologist read the MRI as completely normal. No mention whatsoever of any lesions.
A year later, after a bunch of other symptoms, I had another MRI (to rule out MS) at another facility, different radiologist. The report was worded ambiguously--deliberately or not, I don't know--but mentioned a few tiny lesions.
Then in 2002, I had another MRI at the hospital where the first one had been done in 1999 (different machine, though). The SAME radiologist read the scan as having scattered small lesions and NOW said that "similar findings" were on the 1999 scan, which he himself had previously read as normal. And he also wrote that there had been changes in the meantime, with some lesions clearing and others appearing.
All this, however, plus yet another MRI in 2003 with further mention of appearing and disappearing lesions, was not considered significant by the neurologist, not even enough to follow up with a spinal tap.
Consider yourself lucky that you got a diagnosis, that you have a knowledgeable and thorough neurologist, and that you can get started on treatment for the disease before it worsens. Many people aren't so lucky. (Not that it's lucky to have MS, of course.)
(I don't necessarily think I have MS--though one neuro once essentially told me I had it, despite holding in his hand that very first "normal MRI" report--because my physical exam has not shown any clear and consistent abnormalities except auditory problems--but I sure have some of the symptoms.)
In short, YES, MRIs can be interpreted very differently by different doctors or even the same doctor on different occasions. And neurologists famously seem to differ a lot from radiologists in interpretations--many people have had findings mentioned by radiologists but dismissed by neurologists as insignificant (or nonspecific and therefore nondiagnostic), or occasionally vice versa.
Very best of luck to you!
In 1999 I had an MRI to rule out an inner-ear tumor, following a sudden hearing loss. (I had already had some other weird symptoms--including what I now think was a relatively mild attack of bilateral trigeminal neuralgia--but hadn't told any doctor about them because they went away or were things I'd had for ages and thought were "normal" for me.)
The radiologist read the MRI as completely normal. No mention whatsoever of any lesions.
A year later, after a bunch of other symptoms, I had another MRI (to rule out MS) at another facility, different radiologist. The report was worded ambiguously--deliberately or not, I don't know--but mentioned a few tiny lesions.
Then in 2002, I had another MRI at the hospital where the first one had been done in 1999 (different machine, though). The SAME radiologist read the scan as having scattered small lesions and NOW said that "similar findings" were on the 1999 scan, which he himself had previously read as normal. And he also wrote that there had been changes in the meantime, with some lesions clearing and others appearing.
All this, however, plus yet another MRI in 2003 with further mention of appearing and disappearing lesions, was not considered significant by the neurologist, not even enough to follow up with a spinal tap.
Consider yourself lucky that you got a diagnosis, that you have a knowledgeable and thorough neurologist, and that you can get started on treatment for the disease before it worsens. Many people aren't so lucky. (Not that it's lucky to have MS, of course.)
(I don't necessarily think I have MS--though one neuro once essentially told me I had it, despite holding in his hand that very first "normal MRI" report--because my physical exam has not shown any clear and consistent abnormalities except auditory problems--but I sure have some of the symptoms.)
In short, YES, MRIs can be interpreted very differently by different doctors or even the same doctor on different occasions. And neurologists famously seem to differ a lot from radiologists in interpretations--many people have had findings mentioned by radiologists but dismissed by neurologists as insignificant (or nonspecific and therefore nondiagnostic), or occasionally vice versa.
Very best of luck to you!
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
