My neurologist, refuses to tell me if I have brain atrophy or not. He says the neuroradiologists don’t measure it, and even if they did, we can’t use it to make treatment decisions. Do you agree?
My head (or what’s left of it) says yes I would like to know, my heart says what’s the point, I’ve done hsct, I’m on a highly effective dmt, I am strict with my diet and exercise incase it might help, I am controlling the controllable things.
Obviously it’s a personal preference, but I once read the proximate number of lesions I have, which was written down as ( >) on a report, what has been seen cannot be unseen, I think it would be similar in terms of learning the BVL
I think you would agree that a doctor refusing to tell someone whether their scans indicate brain atrophy or not is condescending and paternalistic, regardless of whether or not there clinical implications. Or, in other words, doctors should never hide test results from patients.
I am at MS centrum in Amsterdam and even there they do not track BVL. I've always been told my brain looks rather normal. My last MRI the radiologist concluded I have a stable form of spinal ppms with little increase iin atrophy of the spinalcord. I went from EDSS 4 to 6 so as a patient i can confirm SCVL and QOL are strongly related. I might have the cognition of a 39 year old and the physical ability of a 93 year old. Simple question: is it safe to say that drugs that will effect BVL will also adres SCVL? Many thanks for all the work it is much appreciated. Greets
When i asked if mine could be measured in my post hsct baseline i was told nhs scanners arent capable of measuring it yet. I wanted to see what would happen if i high dosee with ala like the trial that no one talks about when discussing bvl
Very interesting. I would want to know the rate of my BVL and my brain age (even if slightly depressing!) and to discuss targets - especially now I’m in my 50s - it’s not even discussed - I shall raise it an my annual review.
I haven’t had an MRI in 5 or 6 years, and the routine MRIs I did have taken were taken every 3 to 6 months with two different neurologists and inconsistently. So my question is if it would be possible to measure my total BVL with such an inconsistent record? If I had a set of MRIs taken now and compared with what little records I do have going back 17 years, could a professional measure my total BVL since the first set 17 years ago? And does it matter, or is there something else more important/relevant to achieve that (eg, taking MRIs three months apart during periods of much inflammation and disability burden within a certain time period, like 24 months)? Or is any of this even possible? The most important question I’ve been trying to find an answer for a long time is whether it’s possible to tell from the degree of BVL if the present amount of disability is permanent or not? Or possibly more appropriately if it’s possible to tell how much nerve fibers have been destroyed?
Very interesting to read. Makes me think of the kind of questions I would like to ask next time I see my neuro. Thanks for this.
My head (or what’s left of it) says yes I would like to know, my heart says what’s the point, I’ve done hsct, I’m on a highly effective dmt, I am strict with my diet and exercise incase it might help, I am controlling the controllable things.
Obviously it’s a personal preference, but I once read the proximate number of lesions I have, which was written down as ( >) on a report, what has been seen cannot be unseen, I think it would be similar in terms of learning the BVL
I think you would agree that a doctor refusing to tell someone whether their scans indicate brain atrophy or not is condescending and paternalistic, regardless of whether or not there clinical implications. Or, in other words, doctors should never hide test results from patients.
The numbers you've provided for BVL are in relation to the use of Lemtrada and Gilenya. Are numbers available for Tysabri, Ocrevus, and other DMTs?
I am at MS centrum in Amsterdam and even there they do not track BVL. I've always been told my brain looks rather normal. My last MRI the radiologist concluded I have a stable form of spinal ppms with little increase iin atrophy of the spinalcord. I went from EDSS 4 to 6 so as a patient i can confirm SCVL and QOL are strongly related. I might have the cognition of a 39 year old and the physical ability of a 93 year old. Simple question: is it safe to say that drugs that will effect BVL will also adres SCVL? Many thanks for all the work it is much appreciated. Greets
When i asked if mine could be measured in my post hsct baseline i was told nhs scanners arent capable of measuring it yet. I wanted to see what would happen if i high dosee with ala like the trial that no one talks about when discussing bvl
The patient could do an OCT, which correlates with brain volume loss?
Gavin, after an equivocal VEP my neurologist recommended an OCT, which has showed RNFL of 83, 90.
I find almost no mention of OCT on MS websites or forums; it would be great if you did a piece on it.
Very interesting. I would want to know the rate of my BVL and my brain age (even if slightly depressing!) and to discuss targets - especially now I’m in my 50s - it’s not even discussed - I shall raise it an my annual review.
I haven’t had an MRI in 5 or 6 years, and the routine MRIs I did have taken were taken every 3 to 6 months with two different neurologists and inconsistently. So my question is if it would be possible to measure my total BVL with such an inconsistent record? If I had a set of MRIs taken now and compared with what little records I do have going back 17 years, could a professional measure my total BVL since the first set 17 years ago? And does it matter, or is there something else more important/relevant to achieve that (eg, taking MRIs three months apart during periods of much inflammation and disability burden within a certain time period, like 24 months)? Or is any of this even possible? The most important question I’ve been trying to find an answer for a long time is whether it’s possible to tell from the degree of BVL if the present amount of disability is permanent or not? Or possibly more appropriately if it’s possible to tell how much nerve fibers have been destroyed?