Rapidly formed brain lesion. What happened?

[itaska21]

Hi all, I am in shock after receiving the results of my MRI I had in November 2010, (yes, it took that long to receive the results.) There were 2 particular lesions of interest in the report. One lesion measured 5mm. in the right frontal subcortical matter, which was 4.2mm in the cortical matter in October 2009. And, well, a new lesion measuring 11mm. in the right frontal periventricular matter that did'nt exist in October 2009. My now EX. neurologist failed to acknowledge these findings when I saw her the same day after the MRI. Now granted she did'nt have this report in her hands at the time, with her so-called expertise in M.S. she would have noticed this change while comparing the previous MRI to this one. I'm done with her ignorance, I just want to know based on all of your experiences, if you've seen this sort of change yourselves. I'm really scared and lost at this point. Thank you in advance to those who take the time to share their knowledge!

[New2MS]

Don't get discouraged! I had something similar happen to me. I was diagnosed in April 2010 by a neurologist. I wanted to make sure that the diagnosis was correct, so I went to a MS specialist in the medical center. He took me off of my meds in August (that is how long it took to get in to see him) and told me to see a neurosurgeon about the disks in my neck. Neurosurgeon told me my neck was fine and that he thought I did indeed have MS!

New MS Neurologist in December - another MRI and put back on Betaserton immediately. When I had the new MRI in December, I had new lessions in my brain and my cervical spine. I should have been on the Betaseron all along!

Find a doctor you trust - gather your MRI records and keep looking - there are good doctors out there, I promise!

[Filmmaker]

the good news is that disabilty has nothing to do with lesions, so don't stress too much...

[bluesky63]

Just want to add a few more points.

It is common for lesions to come and go. My sympathy -- it feels awful to think of all of that going on in your brain. My first MRI showed tons of lesions. My next one, two months later, showed even more lesions, and in different places. I was completely freaked out. I thought my brain was melting.

My next MRI, five months later, continued along the same scary trend. Thankfully at that point I had switched to an actual MS specialist instead of the general neurologist. He was wonderful and gave a great lesson in MRIs and lesions.

He said that each MRI could miss lesions, that different MRIs are ordered differently -- that they may have thicker or thinner slices -- so depending on the size of the slice, they may find the appearance of more or fewer lesions but the actual lesion load may not have changed. You could even go back for an MRI the same day and have slightly different results.

More: The person reading the MRI may have more or less experience or subjectivity. The length of time the contrast was in your system makes a difference. The machine (age, strength, open or closed) makes a difference. Technique matters. The techs make a difference. And on and on . . . he put my films up and showed me the specific differences between the reports and my actual MRIs. It was amazing.

I learned that a normal MRI may not be normal, that an abnormal MRI may not be abnormal, that changes may not be changes, and that stable may not be stable. Basically, I now want my neurologist to personally examine and review every MRI with me and compare it to old ones. But I really don't get excited about MRIs anymore anyway -- the main thing is how you feel in person.

I hope this is useful and not confusing. The main thing is to make sure your doctor goes over your films with you in detail in person and does not rely on the person reading the MRI to sum up what is going on. And above all else, you need to feel comfortable with your doctors. If you have a big problem at any point, believe me, you are going to be trusting your doctors to make some important decisions, and you need to have a good relationship.

[Loriyas]

Here is my two cents-take it for what it is worth!

To have to wait 5 months to receive MRI results is outrageous and unacceptable. When you see a new neurologist request that another MRI be done, with and without contrast. Then have the neurologist compare the two MRIs with you within a few days. You will then be able to make an informed decision on how to proceed with your treatment. It is bad medicine that your previous neurologist did not feel the need to discuss your MRI results with you in a timely manner.

By the way, get a copy (CD) of the MRI you had done in November (if you have not already done so). That way you can take it to the new neurologist for discussion.

[Cece]

bluesky, very useful. I'd heard about the slices being different sizes or places therefore measuring things slightly differently.

[sou]

Perhaps your ex-neuro's expertise in MS considered the lesions unimportant, as they really are. What matters is the clinical condition. Like others have said, MS is much ore than counting the dots. But since that is the only thing they can do, they keep doing it and they even prescribe drugs for it! Doh!

Is this science or I am missing something important here?

[itaska21]

Thank you so much for your input guys. You brought some things to mind that I have'nt considered, like the clinical aspects of this demon! and, the variety of variables to consider when the mri is performed. I had it done on the 3 tesla with and without contrast. It was brain, cervical, and thoracic spine. I learned some disturbing things about my spinal results as well. By the way, I sat here at home alone and read these results. My neuro. never requested a visit to go over the mri results with the report of the radiologist in hand. She simply chose to briefly go over the mri images for about 10-15min. tops right after the procedure was done. I apologize if i'm being redundant, I still can't believe a self-proclaimed M.S. specialist could care so little. I've cycled through a series of symptoms that usually last 2-6 wks with a 2-2.5 month gap between. That provides a wealth of information in regards to managing the disease in comparison to counting lesions.


To my fellow Houston friend:

my now ex- neurologist is Dr. Flavia Nelson

[willowford]

repeat post. sorry.

[willowford]

Perhaps your ex-neuro's expertise in MS considered the lesions unimportant, as they really are. What matters is the clinical condition. Like others have said, MS is much ore than counting the dots. But since that is the only thing they can do, they keep doing it and they even prescribe drugs for it! Doh!

Is this science or I am missing something important here?

Yes, this is absolutely scientific...I think there may have been a misunderstanding with your ex-neuro's comment.

CNS damage causes symptoms and lesions are important in MS itself. Neuros never say lesions are unimportant to the disease (its a diagnostic criteria and can be used to track the disease over time, which is why they order it).

What neuros actually tell patients is that the lesions are not important TO PATIENTS because all that matters is how they are doing clinically (that's what patients care most about on a day to day basis). If they are not experiencing many symptoms, then why worry about the lesions - for treatment decisions, lesions are important because you want to prevent more/ help heal the ones you have.

Your ex-neuro probably told you this as most neuros do, but didn't explain further what he/she meant not to bore you. But I will in case you're interested

Lesions/atrophy are needed for symptoms (this is why non-MSers don't have your symptoms). In fact, lesions may be seen during relapse, and not seen after its resolution.

The MS lesions visible by current methods are ASSOCIATED with clinical presentation - but the relationship is not 100% - various studies report different degrees of relationships depending on who they studies, the measures they used, the analysis techniques, etc.

Why isn't the relationship 100%?

(1) The techniques used to image the brain and analyze images is where the relationship between lesions and symptoms is reduced. E.g., Research studies use much more stringent ways of detecting brain abnormalities compared to clinics (sometimes may take up to 10-15 hours to do a full analysis of a single patient's brain in a study). The techniques for detecting and analyzing lesions is not perfect and so neither is the relationship with symptoms.

(2) Lesion location matters too! (some locations produce more noticeable effects than others).

(3) Sometimes symptoms are too mild and not noticeable - slight problems in concentration that you didn't have before, fatigue, or sleep problems, are all symptoms that are influenced by the CNS.

So lesions are not "unimportant" for MS as a disease. They are a big part of it! (if anyone comes up with a way to completely prevent them form ever occurring, they may actually stop the disease).

Any symptoms you have are due to these and other brain changes. BUT in terms of predicting YOUR symptoms as an individual patient, just because there is a relationship DOESN'T mean that for every extra lesion you have, the clinical presentation will be one degree worst. The relationship is not one-to-one.

As others have mentioned, if you're doing well clinically, then that's all that is important from a clinical perspective - no point worrying about lesions that aren't leading to major problems. I truly hope you find a good neurologist that can explain things to you in a better way than your last experiences. Good luck!

(references available upon request if anyone has troubling accessing a database; just way too many to list here).

[Cece]

(if anyone comes up with a way to completely prevent them form ever occurring, they may actually stop the disease).

but what about the gray matter damage (to axons) that is present very early in the disease...
http://www.neurology.org/content/57/7/1248.short

btw willowford have you read through all the abstracts from the ISNVD conference in March? I enjoyed them: http://ccsvism.xoom.it/Convegno_ISNVD.html

[willowford]

(if anyone comes up with a way to completely prevent them form ever occurring, they may actually stop the disease).

but what about the gray matter damage (to axons) that is present very early in the disease...
http://www.neurology.org/content/57/7/1248.short

btw willowford have you read through all the abstracts from the ISNVD conference in March? I enjoyed them: http://ccsvism.xoom.it/Convegno_ISNVD.html

I haven't. Thanks for the post! I have to admit I went straight for the cognition one - that's where my "expertise" is in for the time being.

I'm working on a super long (per usual) answer to you question about career course. Hope you won't hate me more when I post it (It's LONG!)

[willowford]

(if anyone comes up with a way to completely prevent them form ever occurring, they may actually stop the disease).

but what about the gray matter damage (to axons) that is present very early in the disease...
http://www.neurology.org/content/57/7/1248.short

Yeah... those lesions too - grey or white. (couldn't open your link but I assume it was grey mater lesion research). Grey mater is mostly non-axonal (but does include axons) - there is exciting new evidence to suggest that they too are affected! ("new" in science language = last decade-ish). We don't know the extent of their contribution yet to symptoms (there has been only a couple dozen studies I think on this - I could be wrong on that number).

I think that phrase was in response to a post by someone else who was told by a neuro that "lesions don't matter in MS" and the poster was questioning the validity of detecting lesions to begin with based on this statement.

I've heard neuros say things like that to patients; their main point is sometimes misinterpreted; they're not saying lesions don't mean anything and we measure them cause we're bored; they're actually saying, don't be overly concerned with how many/where if you're doing fine clinically (it's a logical approach); the neuros themselves actually pay close attention to them though.

Lesions are the hallmark as you know. They were the first pathologies noted by Charcot when he first described MS.

Inflammation is the other issue (hence all the disease modifying drugs out there that essentially downplay the immune system). Other possibilities are being explored (like the venous system being involved obviously but there are many others too that we don't hear about).

These other things would have to somehow explain how the demyelination/remyelination (--> lesions) occurs. e.g., iron deposits for ccsvi as a cause; other stuff for the other proposed causes

[sou]

Grey mater is mostly non-axonal (but does include axons) - there is exciting new evidence to suggest that they too are affected!

No axons => no myelin. The gray matter consists of the "heads" of the neurons. Why is there gray matter involvement in an autoimmune disease, whose antigen is the MBP? There is no MBP in gray matter.

[willowford]

Grey mater is mostly non-axonal (but does include axons) - there is exciting new evidence to suggest that they too are affected!

No axons => no myelin. The gray matter consists of the "heads" of the neurons. Why is there gray matter involvement in an autoimmune disease, whose antigen is the MBP? There is no MBP in gray matter.

Good point - the logic (from traditional MS perspective) is unclear - but for the sake of completeness - grey mater DOES include some myelinated axons - in undergrad texts it is often taught as purely nuclei but this isn't the complete picture. Grey mater also includes neuropil, which consists partially of axons (the terminals) where they form synaptic connections (they also contain other things, but not relevant here).

The statement I made about grey mater being affected in MS was actually not theorizing (ie, logic or reasoning not necessarily known). It was just what has been found in the last several years using the more sensitive measures we now have (immunohistochemistry and more detailed neuroimaging, only used for research purposes for now), we can see a lot more. It's a fascinating area - partly because there are correlations with some symptoms (cognitive dysfunction is the one I'm aware of) and partly because it adds to the info we can use regarding causation.

What we know so far (based on the studies) is that grey mater lesions are different than white mater lesions - less inflammation/ infiltration in grey mater lesions. And it's not just the axon terminals that are affected - there does also appear to be neuronal injury (lots more is known on this topic, but too much to mention here - PubMed search should help - I think there should be more than enough studies by now for there to be at least a few good review articles).

(for the neuroanatomy geeks like myself, try a neuro textbook online, or research articles; anything less academic may not contain the details).

Again, the logic of this based on the traditional view of MS as purely "white mater disease"? Too early to tell; I certainly can't presume to know.

The more I learn about the body the more I realize that it is rarely logical... so I have to learn not to assume anything.