Hi Prof G, great newsletter again and thank you. Would there ever be a case where on post-mortem a brain showed no MS evidence due to catching the disease very early and high efficiency DMT for example Lemtrada? Or will there always be historical signs? I was also interested in the E.P. Showing MS which MRI may not pick up - so are EP used post diagnosis at all to check disease progression and why do MRI’s not pick up everything? Thanks!
Re: "Would there ever be a case where on post-mortem a brain showed no MS evidence due to catching the disease very early and high-efficiency DMT for example Lemtrada?"
I suspect not, provided the pathologist looked closely. For every lesion seen on MRI there are 20+ lesions that are microscopic and ~60% of the lesion burden is in the grey matter that is not seen on standard MRI.
Re: "Are EP used post-diagnosis at all to check disease progression and why do MRI’s not pick up everything?"
Yes, EPs are used in some specialist centres but don't really add much outside of the diagnostic work-up. They can be helpful post-diagnosis it help decide if vertigo is due to peripheral and central problems.
MRI's don't pick up everything because they only have a resolution of ~3-4 mm and MS is really a microscopic disease with most lesions being smaller than 3-4mm in size or they occur in the grey matter where the MRI contrast is not good enough to see lesions relative to normal-appearing grey matter.
This is a fascinating thought. So if MRIs do not pick up a lot of disease, this is why many people have symptoms prior to lesions being seen?
What would you do in the case of a pt that displays DIT due to attacks, two small non specific lesions in MS typical white matter regions, with normal LP but abnormal neurological exam? Treat or watch and wait?
About 25% of people who have MS at post-mortem are not diagnosed in life. These people may have had asymptomatic MS or symptoms that were relatively mild or atypical and were not considered as being due to MS.
Thank you for your reply and taking the time to find out the information, as I could not find anything in literature to confirm this, only the opposite. It does not surprise me. It would be interesting to know how many had been seen and dismissed by a neurologist.
Thank you for your time in maintaining this selfie. You need not have done so after experiencing such a momentous change yourself. I do hope you (and your family) are coping.
I think it's also very important to get a second opinion/confirmed diagnosis early on.
My experience is that, the longer you have been diagnosed and 'succesful' on DMTs, the less likely a neurologist will be willing to give you a 'proper' second opinion (the reason you are 'succesful' on DMTs could very well be that you don't have MS).
The reluctance to come back on an MS-diagnosis after a long time is understandable, in a way, but it is something newly diagnosed patients do not realize. In reality, it is not something you can always have checked out later.
Hi Prof G, great newsletter again and thank you. Would there ever be a case where on post-mortem a brain showed no MS evidence due to catching the disease very early and high efficiency DMT for example Lemtrada? Or will there always be historical signs? I was also interested in the E.P. Showing MS which MRI may not pick up - so are EP used post diagnosis at all to check disease progression and why do MRI’s not pick up everything? Thanks!
Re: "Would there ever be a case where on post-mortem a brain showed no MS evidence due to catching the disease very early and high-efficiency DMT for example Lemtrada?"
I suspect not, provided the pathologist looked closely. For every lesion seen on MRI there are 20+ lesions that are microscopic and ~60% of the lesion burden is in the grey matter that is not seen on standard MRI.
wow that's incredible, I had no idea about the microscopic lesions. Thank you for both replies.
Re: "Are EP used post-diagnosis at all to check disease progression and why do MRI’s not pick up everything?"
Yes, EPs are used in some specialist centres but don't really add much outside of the diagnostic work-up. They can be helpful post-diagnosis it help decide if vertigo is due to peripheral and central problems.
MRI's don't pick up everything because they only have a resolution of ~3-4 mm and MS is really a microscopic disease with most lesions being smaller than 3-4mm in size or they occur in the grey matter where the MRI contrast is not good enough to see lesions relative to normal-appearing grey matter.
This is a fascinating thought. So if MRIs do not pick up a lot of disease, this is why many people have symptoms prior to lesions being seen?
What would you do in the case of a pt that displays DIT due to attacks, two small non specific lesions in MS typical white matter regions, with normal LP but abnormal neurological exam? Treat or watch and wait?
Hello Prof G. Turning this around, are there figures to show the opposite? Those who should have been diagnosed with MS, but were not.
Thank you. Eve
About 25% of people who have MS at post-mortem are not diagnosed in life. These people may have had asymptomatic MS or symptoms that were relatively mild or atypical and were not considered as being due to MS.
Thank you for your reply and taking the time to find out the information, as I could not find anything in literature to confirm this, only the opposite. It does not surprise me. It would be interesting to know how many had been seen and dismissed by a neurologist.
Thank you for your time in maintaining this selfie. You need not have done so after experiencing such a momentous change yourself. I do hope you (and your family) are coping.
Eve
I had a second opinion to be on the safe side but sadly it seems a very real PPMS.
This is very important indeed.
I think it's also very important to get a second opinion/confirmed diagnosis early on.
My experience is that, the longer you have been diagnosed and 'succesful' on DMTs, the less likely a neurologist will be willing to give you a 'proper' second opinion (the reason you are 'succesful' on DMTs could very well be that you don't have MS).
The reluctance to come back on an MS-diagnosis after a long time is understandable, in a way, but it is something newly diagnosed patients do not realize. In reality, it is not something you can always have checked out later.