It would help determine whether the crushing fatigue, inability to focus, and significantly reduced resilience stems from or is more likely related to MS pathology -- as opposed to depression, stress, or laziness!
I've tried all available stimulants, many anti-depressants, ALCAR, B12, Nicotine, exercise, and meditation -- often in concert -- with little to no improvement.
I enrolled in law school 8 years after diagnosis and graduated near the top of my class. 6-7 years later, I am failing at a law adjacent job I used to crush with minimal effort. The resulting financial stress, compounded with a recent divorce leave me oscillating between anger, grief, and disappointment!
Untangling MS pathology from moral failings and/or other issues would help me unclench!
So sorry- MS fatigue is horrible! I think I can reassure you that NO you are not lazy! I think depression and stress feed into MS fatigue despite being on medication- I’m on 2 antidepressants. My neurologist has suggested I try 4-aminopyridine (Fampyra) as it has helped some people with fatigue. Apparently I should know if it’s working within 4 weeks. I hear you - know you are not alone in that ossification between anger grief and disappointment.
Thank you for your comment. I have learned to trust and advocate for myself, but I've been more vulnerable and weak recently. Your reassurance was a good reminder!
I have not tried Fampyra. I'll ask my Doc to see what he thinks.
Very interesting article Gavin. I have some recent experience of a similar MRI/AI assessment called NeuroQuant. It provides the volume of specific brain structures affected by neurodegenerative diseases and compares these measurements to healthy brains of similar age, sex, and skull size. My brain is on the 1st percentile for size and the 98th for white matter hypointensities, 99th percentile for ventricle volume. 1st percentile for cerebral white matter and ventral diencephalon and 1st percentile for frontal cortex volume. I can see by looking at my MRI that my brain age is well above my chronological age. I had always pointed out the atrophy to my neurologists but they didn’t seem to have any helpful comments. In fact one neurologist told me “by the time he’d be worried about atrophy, I wouldn’t be.” I was expecting the results to be challenging which they were but also they were validating. As to what to do with the results… my GP has told me not to focus on it, however, it is worrying as I’m 48 and my brain looks more like 68. It has made me reevaluate what I am doing and made me look further into brain health. I’m on Natalizumab 6 weekly and my MRI is stable. I am trying to increase my activity levels and loose weight. I have always loved learning so I am considering doing some post-graduate courses in the hope that more brain connections equals a healthier brain. I’d still like some more direction on what other things I should be doing. I want to preserve what I’ve still got! Thank you for raising this issue. Jane
Hi Jane please look into paul stamens stacking of lionsmane mushroom and other things it's very interesting and I actually think may give a bit of hope as it did for us, take care
“would you want to know the age of your brain relative to your chronological age?”
What’s the point if you (or rather neurology) can’t do anything about it? If your MS brain is c.10 years older than your chronological age, this means you must be at higher risk of dementia / getting dementia earlier. It probably links with the often quoted “MS reduces life expectancy by c.10 years”. Rather depressing if you have MS.
MS research seems to be stuck in a rut. Ever increasing tools / methods for measuring brain / spinal cord destruction / atrophy, but no solutions. Someone once said “what gets measured gets managed”. MS research seems to have forgotten the “managed” bit. Perhaps Elon Musk can run the show for a couple of years and get drugs to address smouldering MS on the shelves ASAP. We could then wind up ECTRIMS, ACTRIMS….. organisations / meetings which are as useful as chocolate teapots.
Interesting that the focus has been MS and ageing - pleased about this as, in my view, this is an under recognised area of MS and becomes more relevant as DMTs become more effective. Other than making sure I maintain a healthy lifestyle, I’m not sure what the benefit would be of knowing the age of my brain - am I missing something?
For someone who has recently secured ill health retirement, this information would help with the process of reconciliation to why I was struggling to cope with my knowledge/emotional labour job.
At 62 it's somewhat frightening that my brain age could possibly be 72 however looking on the brighter side doing all the things that sparky 90 year old do like socialising, keeping fit, having a faith or political engagement, eating well and drinking very moderately and not smoking should help.
To focus on brain health in MS is key to staying as well as possible in my view.
Exactly, for years as I keep saying my husband was fobbed off with brain fog fatigue depression stress etc etc and we knew it was more , fast forward 15 years and now has a diagnosis of dementia syndrome secondary to multiple sclerosis!!! We attend Leicester ms therapy centre and having been looking after growing up with my husband for 31 years( he was diagnosed at 14 but had first episode of optic neuritis at 13, we got together at 16 and now 47) I can tell you the common signs I see for many pwms who like hubby will tell you they know there first symptoms were in their early teens and I can see they are or are going the same way as my husband. I'm still shouting it but feel prof G is the only person acknowledging it that MS is more about cognitive decline than physical. Obviously there is physical in most patients to some degree but alot we see " look drunk" coordination issues drop foot etc etc but cognition is one of their biggest.
Personally, I would not want to know unless there was something I could do about it that would only be available if I did the scan. I do as much as I can already with regards to general healthy living and keeping the brain active etc.
I would be keen to know my brain health. I’m 46 years old and work part time. I know I won’t work until I’m 65 years old. I would use the info as a guide for planning. My MS is invisible to everyone except me and sharing this info might help others understand. I live my life differently to people my age.
I think I would like to know if this was offered to me. Having also been treated for cancer I live now with the assumption that my life will be shorter, and less active than it may have been. At 54 I am keen to make the most of the life as I've got it now. I am retired (ill health) and try to remember every day that now is what matters. My husband doesn't totally get it yet that my health will decline much quicker than his (he's still working, but as a teacher so could take his pension). If I knew my brain age it may help him understand that we need to live now, not at some random point in the future which may never come.
I am 48 years old and was diagnosed at 25 years old. The first high efficacy treatment I had was when I was 35, if Natalizumab is considered as one of these. So for 10 years I struggled with many relapses and symptoms whilst being on lower efficacy treatments.
7 months ago I took myself off to Mexico to have HSCT and I honestly think it’s the best decision ever. But if there was ever a treatment to reverse the brain aging effects of MS I would take it in a heartbeat.
It would be interesting to know. A few years ago I would have been too fearful, but somehow seem to have become braver as I have become more physically impacted by MS.
I’d be keen to know what the benefit of knowing my brain age would be, and to receive support to process any bad news, and advice on what actions to take. I practice the ‘marginal gains’ approach anyway, so I guess I would refocus on the details of that to see if there was anything further I could do.
And it’s good to hear about the focus on MS and ageing.
I'd like to know so can plan for the future. I am not aware of any aging - I'm on Tecfidera but I would want to know if my brain age is 10 years older so I can plan with my family for the future.
I was told after one of my early MRI scans that I had significant brain shrinkage for my age but no advice was given about this and it was only when my MS became more aggressive and I started to struggle with physical symptoms that I was put on Tysabri. I reported that I was struggling a lot more with cognitive function so an occupational therapist was sent to my home who carried out a test that she told me was used on patients with dementia! I had two degrees and they had no baseline of my cognitive ability. I have recently started using the free app “Luminosity” daily to help train my brain. Can you recommend any other free apps to help cognitive function? My understanding is that the brain is similar to a muscle so that we can train it to maximise its capabilities. I stopped working as a physio because I wasn’t physically capable anymore but since HSCT I am now physically able but know that I couldn’t concentrate for long enough to do courses to update my CPD after 12 years of not working.
Nope. I know what my body and brain can do and what it can’t do. So as I see it, an mri + ai could (1) affirm that which doesn’t help me, or it can tell me my brain my brain is younger than I think, and that will make me feel crappy, or it tells me my brain is not as young as I think. No win
I would definitely want to know. It would help me plan for how to try to combat this decline, plus it might remove some of the feeling of failure that I have, because I often feel so tired. It would also be good to know what I could do to combat the low libido I have most of the time.
It would help determine whether the crushing fatigue, inability to focus, and significantly reduced resilience stems from or is more likely related to MS pathology -- as opposed to depression, stress, or laziness!
I've tried all available stimulants, many anti-depressants, ALCAR, B12, Nicotine, exercise, and meditation -- often in concert -- with little to no improvement.
I enrolled in law school 8 years after diagnosis and graduated near the top of my class. 6-7 years later, I am failing at a law adjacent job I used to crush with minimal effort. The resulting financial stress, compounded with a recent divorce leave me oscillating between anger, grief, and disappointment!
Untangling MS pathology from moral failings and/or other issues would help me unclench!
https://gavingiovannoni.substack.com/p/do-you-suffer-from-cog-fog-fatigue
Thnks Doc.
Please figure out this godforsaken disease, soon!
https://gavingiovannoni.substack.com/p/why-am-i-so-fatigued
So sorry- MS fatigue is horrible! I think I can reassure you that NO you are not lazy! I think depression and stress feed into MS fatigue despite being on medication- I’m on 2 antidepressants. My neurologist has suggested I try 4-aminopyridine (Fampyra) as it has helped some people with fatigue. Apparently I should know if it’s working within 4 weeks. I hear you - know you are not alone in that ossification between anger grief and disappointment.
Thank you for your comment. I have learned to trust and advocate for myself, but I've been more vulnerable and weak recently. Your reassurance was a good reminder!
I have not tried Fampyra. I'll ask my Doc to see what he thinks.
Have you tried Modafinil? It changed a lot of how I feel! I have very similar issues 😔
Yes, and armodafinil. Vyvanse was great until it wasn't.
Very interesting article Gavin. I have some recent experience of a similar MRI/AI assessment called NeuroQuant. It provides the volume of specific brain structures affected by neurodegenerative diseases and compares these measurements to healthy brains of similar age, sex, and skull size. My brain is on the 1st percentile for size and the 98th for white matter hypointensities, 99th percentile for ventricle volume. 1st percentile for cerebral white matter and ventral diencephalon and 1st percentile for frontal cortex volume. I can see by looking at my MRI that my brain age is well above my chronological age. I had always pointed out the atrophy to my neurologists but they didn’t seem to have any helpful comments. In fact one neurologist told me “by the time he’d be worried about atrophy, I wouldn’t be.” I was expecting the results to be challenging which they were but also they were validating. As to what to do with the results… my GP has told me not to focus on it, however, it is worrying as I’m 48 and my brain looks more like 68. It has made me reevaluate what I am doing and made me look further into brain health. I’m on Natalizumab 6 weekly and my MRI is stable. I am trying to increase my activity levels and loose weight. I have always loved learning so I am considering doing some post-graduate courses in the hope that more brain connections equals a healthier brain. I’d still like some more direction on what other things I should be doing. I want to preserve what I’ve still got! Thank you for raising this issue. Jane
Hi Jane please look into paul stamens stacking of lionsmane mushroom and other things it's very interesting and I actually think may give a bit of hope as it did for us, take care
Thank you, I will have a look!
“would you want to know the age of your brain relative to your chronological age?”
What’s the point if you (or rather neurology) can’t do anything about it? If your MS brain is c.10 years older than your chronological age, this means you must be at higher risk of dementia / getting dementia earlier. It probably links with the often quoted “MS reduces life expectancy by c.10 years”. Rather depressing if you have MS.
MS research seems to be stuck in a rut. Ever increasing tools / methods for measuring brain / spinal cord destruction / atrophy, but no solutions. Someone once said “what gets measured gets managed”. MS research seems to have forgotten the “managed” bit. Perhaps Elon Musk can run the show for a couple of years and get drugs to address smouldering MS on the shelves ASAP. We could then wind up ECTRIMS, ACTRIMS….. organisations / meetings which are as useful as chocolate teapots.
Those are words of wisdom. You are a sage.
Interesting that the focus has been MS and ageing - pleased about this as, in my view, this is an under recognised area of MS and becomes more relevant as DMTs become more effective. Other than making sure I maintain a healthy lifestyle, I’m not sure what the benefit would be of knowing the age of my brain - am I missing something?
It was a rhetorical question. I suspect it will only help if the brain age can be used to guide treatment.
That makes sense
For someone who has recently secured ill health retirement, this information would help with the process of reconciliation to why I was struggling to cope with my knowledge/emotional labour job.
At 62 it's somewhat frightening that my brain age could possibly be 72 however looking on the brighter side doing all the things that sparky 90 year old do like socialising, keeping fit, having a faith or political engagement, eating well and drinking very moderately and not smoking should help.
To focus on brain health in MS is key to staying as well as possible in my view.
Exactly, for years as I keep saying my husband was fobbed off with brain fog fatigue depression stress etc etc and we knew it was more , fast forward 15 years and now has a diagnosis of dementia syndrome secondary to multiple sclerosis!!! We attend Leicester ms therapy centre and having been looking after growing up with my husband for 31 years( he was diagnosed at 14 but had first episode of optic neuritis at 13, we got together at 16 and now 47) I can tell you the common signs I see for many pwms who like hubby will tell you they know there first symptoms were in their early teens and I can see they are or are going the same way as my husband. I'm still shouting it but feel prof G is the only person acknowledging it that MS is more about cognitive decline than physical. Obviously there is physical in most patients to some degree but alot we see " look drunk" coordination issues drop foot etc etc but cognition is one of their biggest.
https://gavingiovannoni.substack.com/p/q-and-a-39-can-multiple-sclerosis?utm_source=publication-search
Thankyou
Personally, I would not want to know unless there was something I could do about it that would only be available if I did the scan. I do as much as I can already with regards to general healthy living and keeping the brain active etc.
I would be keen to know my brain health. I’m 46 years old and work part time. I know I won’t work until I’m 65 years old. I would use the info as a guide for planning. My MS is invisible to everyone except me and sharing this info might help others understand. I live my life differently to people my age.
I think I would like to know if this was offered to me. Having also been treated for cancer I live now with the assumption that my life will be shorter, and less active than it may have been. At 54 I am keen to make the most of the life as I've got it now. I am retired (ill health) and try to remember every day that now is what matters. My husband doesn't totally get it yet that my health will decline much quicker than his (he's still working, but as a teacher so could take his pension). If I knew my brain age it may help him understand that we need to live now, not at some random point in the future which may never come.
Oh hooray! Another test. Talk to me when something can be done
I would love to know my brain age.
I am 48 years old and was diagnosed at 25 years old. The first high efficacy treatment I had was when I was 35, if Natalizumab is considered as one of these. So for 10 years I struggled with many relapses and symptoms whilst being on lower efficacy treatments.
7 months ago I took myself off to Mexico to have HSCT and I honestly think it’s the best decision ever. But if there was ever a treatment to reverse the brain aging effects of MS I would take it in a heartbeat.
It would be interesting to know. A few years ago I would have been too fearful, but somehow seem to have become braver as I have become more physically impacted by MS.
I’d be keen to know what the benefit of knowing my brain age would be, and to receive support to process any bad news, and advice on what actions to take. I practice the ‘marginal gains’ approach anyway, so I guess I would refocus on the details of that to see if there was anything further I could do.
And it’s good to hear about the focus on MS and ageing.
I'd like to know so can plan for the future. I am not aware of any aging - I'm on Tecfidera but I would want to know if my brain age is 10 years older so I can plan with my family for the future.
I was told after one of my early MRI scans that I had significant brain shrinkage for my age but no advice was given about this and it was only when my MS became more aggressive and I started to struggle with physical symptoms that I was put on Tysabri. I reported that I was struggling a lot more with cognitive function so an occupational therapist was sent to my home who carried out a test that she told me was used on patients with dementia! I had two degrees and they had no baseline of my cognitive ability. I have recently started using the free app “Luminosity” daily to help train my brain. Can you recommend any other free apps to help cognitive function? My understanding is that the brain is similar to a muscle so that we can train it to maximise its capabilities. I stopped working as a physio because I wasn’t physically capable anymore but since HSCT I am now physically able but know that I couldn’t concentrate for long enough to do courses to update my CPD after 12 years of not working.
Nope. I know what my body and brain can do and what it can’t do. So as I see it, an mri + ai could (1) affirm that which doesn’t help me, or it can tell me my brain my brain is younger than I think, and that will make me feel crappy, or it tells me my brain is not as young as I think. No win
I would definitely want to know. It would help me plan for how to try to combat this decline, plus it might remove some of the feeling of failure that I have, because I often feel so tired. It would also be good to know what I could do to combat the low libido I have most of the time.