sou wrote: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).