As a very latecomer ( 56 on diagnosis) I would like to know prognosis in plain simple English-based on current prognosis markers in common use and understood by neurologists .
For example, would you like to know the average time to needing to use a walking stick, a wheelchair, or the beginning of hand function loss, i.e., EDSS 6.0, 7.0, or 8.0?
I agree with this sentiment. At 50 years old I was told at the time by neuro i probably had MS for “many years “ yet the 3 DMT I have been on haven’t stopped any progression . Could there have been a better way to determine what I should have been considered for treatment. I am 68 now and don’t want to be lost in the forgotten age group for new treatments.
This is why you need regular follow-up and need to engage with your HCPs about emerging treatments. The treatment target in MS is moving beyond focal inflammation to target smouldering MS. So you may be eligible for new treatments in the future.
I would only want more information on prognosis if there was a medical intervention for it as I do everything else I can already with regard to healthy living etc.
Uncertainty is unsettling but it leaves room for hope xx
P.s. have never had any of those additional tests - based in Scotland.
This is a real toughie! Dxd 23 yrs ago and on Tysabri since 2009. There is no doubt my symptoms are worsening despite no change in number or activity of lesions on MRIs. But if I knew more about the progression of my MS would it make any difference to my treatment? I'm already 64, I don't want to come off Tysabri as I'm plagued with 'what ifs'. What if I come off it and relapse? What if a replacement DMT doesn't work as well? What if I've been lucky so far?
I've always wanted to know everything about MS but is learning how it's going to progress from now on just a step too far for me? Unless I can be cured, then yes.
Great post Prof. It shows, certainly in my case, that it’s mainly just box ticking. I believe that compared to other diseases senior NHS decision makers and NICE exhibit apathy towards MS. Furthermore difference of opinions amongst Neuros leads to a postcode lottery for treatments and advice, willingness to support an IFR when a treatment is refused locally.
Here are my answers to your questions:
1. “How many of you know what your spinal fluid GFAP and CHI3L1 levels are?”
No idea
2. “How many of you are having regular serum NFL levels measured?”
I’m not
3. “Are you having annual spinal cord MRI scans to detect new or expanding spinal cord lesions?”
Yes but results take months.
4. “Does your centre tell you that you have paramagnetic iron rim or slowly expanding lesions on MRI?”
No. What are they?
5. “Do you have annual brain volume measurements and annual OCT to measure how thick your retinal nerve fibre layers are?”
No
All these factors are associated with a poor prognosis are your words and so true for me as my health and life deteriorates. Knowing now that earlier intervention would have helped to prevent, slow down my progression is desperately sad for me
I’m no to all the questions. I get a brain mri every 2 years. Takes about a year to get a letter saying no change. However, a junior team of neurology showed me my scan and lesions had spread like fluffy clouds. Whatever this means. I give up expecting explanations.
Yes please to research related emails - as much information as possible that has been filtered by your experience/viewpoint is very helpful
Yes I want to know as much as possible re prognosis so I can make informed decisions/choices - I know some people would rather be in denial but for me I would hate to not have done something that could have given me a better quality of life for longer because I was too afraid to find out.
Not knowing doesn't stop this disease from happening to you and tragically the more you do to stop it earlier the less bad it will be (it is beyond appalling how long it takes to get a diagnosis and treatment in the UK and even more appalling that the treatment criteria prevent so many who could benefit from getting treatment that would help them) and similarly by implementing best practice (again unlikely to be offered on the NHS) the longer you can slow the impact of its many hideous symptoms; most people wouldn't wait until it was too late to treat cancer - so by not knowing you are only harming yourself and your future (and of those around you) so yes please - please continue to help us to find out our prognosis and where the current best practice is for each symptom
“The problem with the prediction of worsening MS is that it is probably not worth looking for it unless you can do something about it.”
The key sentence in your piece. When do you see this changing? In the pipeline are:
- BTKis
- remyelination therapies (would they help with worsening MS?)
We’ve had a string of failures of trials to address worsening MS eg MS Smart, MS Stat. The Octopus trial appears underwhelming in the drugs being tested ie nothing novel. The Sizomus trial seems to have bitten the dust (I finished on this trial over two years ago!).
What’s the reason for the lack of advances regarding treating worsening MS? Are the mechanisms causing the tissue damage just not fully understood, or are there no potential drugs which effectively address them? What happened to the International Progressive MS Alliance? Seemed a good idea at the time, but pretty much a chocolate teapot (useless).
There are multiple reasons why things aren't moving forward faster, with one of the biggest issues being that large trials are so expensive, and without enough collaboration and participation, as well as many trials not being designed well enough. I don't mean to be a wet blanket, but the reparative therapies are still pretty much in their infancy, and are quite a few years away from being able to help some, if at all.
I would want to know. I once asked my neurologist this exact question in year 2 after diagnosis and he said basically "We can't know at all for the first 5-6 years, at that point you can have a chance of a good prognosis but it takes 10-15 years to be certain." I was really nervous to ask the question, and I thought a lot about whether I wanted to know or not. But it came down to knowledge is better than ignorance and I'd rather inform my lifestyle and treatment decisions accordingly.
I'll also note that I reached 15 years this last May! I've had no progression, have the same EDSS score as when I was diagnosed of 1.0 - 1.5 (in no small part to taking alemtuzumab). I had a wee celebration at year 5, 6, 10 and 15!
I'm surprised to see you asking this question as a proponent of shared responsbility and helping pWMS to do everything they can to optimize brain health.
Of course I want to know prognosis. Brutal honesty. Even if it doesn't affect medical treatment, yet, there are practical reasons that affect someone's life:
-how aggressive do I need to be about finances? I need to know realistically when I should expect to stop working in order to make a retirement plan
-I live alone. For how long is that practical? What kind of support do I need to think about long term? You recently wrote about end of life planning and how it helps loved ones. What about end of "quality of life" if that makes sense? Shouldn't you do everything you can now to minimize burden to others - financial or otherwise - in the future?
-Will I need to sell my home, move to a cheaper area etc?
Knowing the realities of a prognosis helps life planning and gives people some semblance of control in the things they can control.
In addition, knowing your prognosis may make you more aggressive in signing up for clinical trials or switching treatments and soon as a new one is approved that may be a better fit - etc.
As your reader I know that time is brain and that damage can't be undone - I would want all the information to help me be as proactive as I can to prevent this. I don't think that's for another person to decide whether or not I should have that. However, given some of the responses it may be fair for a physician to ASK if you want all the info on prognosis if it would not change your current treatment recommendations. People are different, after all, and. sometimes giving people that agency over their decision making helps with the impact of this disease.
I absolutely want ALL information. Other than MRIs I have no testing and knowledge of any of the other specifics you mention. When I asked for details about my lesions (numbers/placement) I was told they don’t give out that information. Frustrating. I’m relatively new to this but have clearly had it for 10-15 years. I want all my info.
Someone seriously misinformed you Tanya. The NHS Constitution (can find it online) contains several rights for patients, including access to health records, including diagnostic reports. I chase up every year on having my centre email me a copy of my MRI Report. Furthermore the right to access information is covered by the Data Protection Act.
I am enormously grateful for your emails which provide a curated knowledge base for pwms. So, yes please for info and I can put together my next uncomfortable question for my neurologist.
AI might provide info, but it can’t provide the insights and understanding you’ve gained over many years ProfG! Plus by engaging with pwMS you’ve refined and developed your perspectives - wasn’t it you who did a survey on Bart’s Blog a few years ago where so many of us said we didn’t like the term progressive MS
No, it most certainly will not. AI, takes the information it can find currently on the web and regurgitates it. It can't nuance the information and know what to keep and what to reject. That's why sites such as MS-Selfie are so important, we know where the information is coming from and that it is a trusted source.
Those who push generative AI have been very good at convincing the people who decide about labor that generative AI will replace labor, but significantly less good at building AI that effectively replaces labor. This applies to jobs that require much, much less knowledge and decisionmaking than you share in MS-selfie.
Yes I would want to know. I think annual brain & spinal MRI’s should be done routinely which does not happen at my centre. It would improve monitoring. I also would want to know so I can make an informed choice regarding treatment- more information = a better/more tailored treatment plan even with some of the barriers of the nhs
1. I wish you would include comorbidities in your consideration. I’ve got multiple comorbidities which definitely interacts with my MS – in very bad ways.
But Most people assume that whatever I’ve got is due to my MS. When often it isn’t. E.g. recently I was having terrible spasms which everyone thought were due to my ms. These spasms went away straight away when my faulty NHS delivered mattress was replaced
2. I wish even more that your ideas about MS being one disease rather than the false distinctions between relapsing remitting – secondary progressive et cetera were more widely accepted.
When this is so, it will surely affect these ridiculous rules we are all subject to about various medications
3, I think any idea about prognosticating about what might possibly be happening could be much more useful if it was thought of in terms of what we might be doing about it. I’m including exercise and diet and mental health measures and comorbidities alongside specific DMTs.
That would be a lot less stigmatising and depressing - and instead emphasise agency
Yes 100%. As we know Anneke at the Alfred in melbourne misdiagnosed me with something, and completely missed something serious. I am honestly happier that another ophthalmologist has found it, knowing what the outlook is likely to be. The same as if my ms was not mild, I would want to know and then you can prioritise certain things while you still have a good quality of life. Patients deserve to know the truth. Anneke v Walt caused me two years of mental hell by missing that serious diagnosis and now that I know what it is I can live with it and plan accordingly.
The assumption is that an individual has the data on which to base a prognosis. With the current state of the NHS it is extremely unlikely that people with MS have regular MRIs, let alone all the other tests mentioned.
Also there is always the patient that "bucks the trend" - I had a gap of over 18 years between my first episode of optic neuritis and the start of "progression".
It’s a blessing and a curse being a trend bucker: on the upside I had 33 years between optic neuritis and ‘progression’ and no noticeable relapses in between (and no knowledge that I had MS so no drugs). On the downside, I’ve declined very quickly since while not being eligible for any DMTs (stable MRIs despite high NFLs)
As a very latecomer ( 56 on diagnosis) I would like to know prognosis in plain simple English-based on current prognosis markers in common use and understood by neurologists .
For example, would you like to know the average time to needing to use a walking stick, a wheelchair, or the beginning of hand function loss, i.e., EDSS 6.0, 7.0, or 8.0?
I agree with this sentiment. At 50 years old I was told at the time by neuro i probably had MS for “many years “ yet the 3 DMT I have been on haven’t stopped any progression . Could there have been a better way to determine what I should have been considered for treatment. I am 68 now and don’t want to be lost in the forgotten age group for new treatments.
This is why you need regular follow-up and need to engage with your HCPs about emerging treatments. The treatment target in MS is moving beyond focal inflammation to target smouldering MS. So you may be eligible for new treatments in the future.
I would only want more information on prognosis if there was a medical intervention for it as I do everything else I can already with regard to healthy living etc.
Uncertainty is unsettling but it leaves room for hope xx
P.s. have never had any of those additional tests - based in Scotland.
This is a real toughie! Dxd 23 yrs ago and on Tysabri since 2009. There is no doubt my symptoms are worsening despite no change in number or activity of lesions on MRIs. But if I knew more about the progression of my MS would it make any difference to my treatment? I'm already 64, I don't want to come off Tysabri as I'm plagued with 'what ifs'. What if I come off it and relapse? What if a replacement DMT doesn't work as well? What if I've been lucky so far?
I've always wanted to know everything about MS but is learning how it's going to progress from now on just a step too far for me? Unless I can be cured, then yes.
Great post Prof. It shows, certainly in my case, that it’s mainly just box ticking. I believe that compared to other diseases senior NHS decision makers and NICE exhibit apathy towards MS. Furthermore difference of opinions amongst Neuros leads to a postcode lottery for treatments and advice, willingness to support an IFR when a treatment is refused locally.
Here are my answers to your questions:
1. “How many of you know what your spinal fluid GFAP and CHI3L1 levels are?”
No idea
2. “How many of you are having regular serum NFL levels measured?”
I’m not
3. “Are you having annual spinal cord MRI scans to detect new or expanding spinal cord lesions?”
Yes but results take months.
4. “Does your centre tell you that you have paramagnetic iron rim or slowly expanding lesions on MRI?”
No. What are they?
5. “Do you have annual brain volume measurements and annual OCT to measure how thick your retinal nerve fibre layers are?”
No
All these factors are associated with a poor prognosis are your words and so true for me as my health and life deteriorates. Knowing now that earlier intervention would have helped to prevent, slow down my progression is desperately sad for me
Yes I would like research led newsletters
I’m no to all the questions. I get a brain mri every 2 years. Takes about a year to get a letter saying no change. However, a junior team of neurology showed me my scan and lesions had spread like fluffy clouds. Whatever this means. I give up expecting explanations.
Hi Helen.
There is apathy in this disease exhibited in many places. Am sorry to hear that you too have been subjected to this
Yes please to research related emails - as much information as possible that has been filtered by your experience/viewpoint is very helpful
Yes I want to know as much as possible re prognosis so I can make informed decisions/choices - I know some people would rather be in denial but for me I would hate to not have done something that could have given me a better quality of life for longer because I was too afraid to find out.
Not knowing doesn't stop this disease from happening to you and tragically the more you do to stop it earlier the less bad it will be (it is beyond appalling how long it takes to get a diagnosis and treatment in the UK and even more appalling that the treatment criteria prevent so many who could benefit from getting treatment that would help them) and similarly by implementing best practice (again unlikely to be offered on the NHS) the longer you can slow the impact of its many hideous symptoms; most people wouldn't wait until it was too late to treat cancer - so by not knowing you are only harming yourself and your future (and of those around you) so yes please - please continue to help us to find out our prognosis and where the current best practice is for each symptom
“The problem with the prediction of worsening MS is that it is probably not worth looking for it unless you can do something about it.”
The key sentence in your piece. When do you see this changing? In the pipeline are:
- BTKis
- remyelination therapies (would they help with worsening MS?)
We’ve had a string of failures of trials to address worsening MS eg MS Smart, MS Stat. The Octopus trial appears underwhelming in the drugs being tested ie nothing novel. The Sizomus trial seems to have bitten the dust (I finished on this trial over two years ago!).
What’s the reason for the lack of advances regarding treating worsening MS? Are the mechanisms causing the tissue damage just not fully understood, or are there no potential drugs which effectively address them? What happened to the International Progressive MS Alliance? Seemed a good idea at the time, but pretty much a chocolate teapot (useless).
Sizomus is still running. Recruitment was slow due to COVID, LPs and being a single-site study.
There are multiple reasons why things aren't moving forward faster, with one of the biggest issues being that large trials are so expensive, and without enough collaboration and participation, as well as many trials not being designed well enough. I don't mean to be a wet blanket, but the reparative therapies are still pretty much in their infancy, and are quite a few years away from being able to help some, if at all.
I would want to know. I once asked my neurologist this exact question in year 2 after diagnosis and he said basically "We can't know at all for the first 5-6 years, at that point you can have a chance of a good prognosis but it takes 10-15 years to be certain." I was really nervous to ask the question, and I thought a lot about whether I wanted to know or not. But it came down to knowledge is better than ignorance and I'd rather inform my lifestyle and treatment decisions accordingly.
I'll also note that I reached 15 years this last May! I've had no progression, have the same EDSS score as when I was diagnosed of 1.0 - 1.5 (in no small part to taking alemtuzumab). I had a wee celebration at year 5, 6, 10 and 15!
I'm surprised to see you asking this question as a proponent of shared responsbility and helping pWMS to do everything they can to optimize brain health.
Of course I want to know prognosis. Brutal honesty. Even if it doesn't affect medical treatment, yet, there are practical reasons that affect someone's life:
-how aggressive do I need to be about finances? I need to know realistically when I should expect to stop working in order to make a retirement plan
-I live alone. For how long is that practical? What kind of support do I need to think about long term? You recently wrote about end of life planning and how it helps loved ones. What about end of "quality of life" if that makes sense? Shouldn't you do everything you can now to minimize burden to others - financial or otherwise - in the future?
-Will I need to sell my home, move to a cheaper area etc?
Knowing the realities of a prognosis helps life planning and gives people some semblance of control in the things they can control.
In addition, knowing your prognosis may make you more aggressive in signing up for clinical trials or switching treatments and soon as a new one is approved that may be a better fit - etc.
As your reader I know that time is brain and that damage can't be undone - I would want all the information to help me be as proactive as I can to prevent this. I don't think that's for another person to decide whether or not I should have that. However, given some of the responses it may be fair for a physician to ASK if you want all the info on prognosis if it would not change your current treatment recommendations. People are different, after all, and. sometimes giving people that agency over their decision making helps with the impact of this disease.
Good comment. I had no idea how much my situation would change, and the help I would need.
Yes, please keep
Sending information! We need to know all the details.
My neurologists have not caught up with the latest in MS. The problem is I have a hard time convincing them!
Thank you!
I absolutely want ALL information. Other than MRIs I have no testing and knowledge of any of the other specifics you mention. When I asked for details about my lesions (numbers/placement) I was told they don’t give out that information. Frustrating. I’m relatively new to this but have clearly had it for 10-15 years. I want all my info.
Only diagnosed at 57…I need to plan!
Someone seriously misinformed you Tanya. The NHS Constitution (can find it online) contains several rights for patients, including access to health records, including diagnostic reports. I chase up every year on having my centre email me a copy of my MRI Report. Furthermore the right to access information is covered by the Data Protection Act.
Thank you
I was 54 at diagnosis, 61 when treatment started, now 64 and I need to know in order to make plans.
I am enormously grateful for your emails which provide a curated knowledge base for pwms. So, yes please for info and I can put together my next uncomfortable question for my neurologist.
I have been told that Chat-GPT5 is going to take away the need for MS-Selfie.
No, it is not.
And Chat-GPT25 will take away the need for us all.
😂
AI might provide info, but it can’t provide the insights and understanding you’ve gained over many years ProfG! Plus by engaging with pwMS you’ve refined and developed your perspectives - wasn’t it you who did a survey on Bart’s Blog a few years ago where so many of us said we didn’t like the term progressive MS
Re: "wasn’t it you who did a survey on Bart’s Blog a few years ago where so many of us said we didn’t like the term progressive MS"
YES
No, it most certainly will not. AI, takes the information it can find currently on the web and regurgitates it. It can't nuance the information and know what to keep and what to reject. That's why sites such as MS-Selfie are so important, we know where the information is coming from and that it is a trusted source.
No. Way.!!!
Those who push generative AI have been very good at convincing the people who decide about labor that generative AI will replace labor, but significantly less good at building AI that effectively replaces labor. This applies to jobs that require much, much less knowledge and decisionmaking than you share in MS-selfie.
This case study has nothing to do with MS, but may be relevant: https://www.acpjournals.org/doi/10.7326/aimcc.2024.1260
Yes I would want to know. I think annual brain & spinal MRI’s should be done routinely which does not happen at my centre. It would improve monitoring. I also would want to know so I can make an informed choice regarding treatment- more information = a better/more tailored treatment plan even with some of the barriers of the nhs
Thanks for this.
1. I wish you would include comorbidities in your consideration. I’ve got multiple comorbidities which definitely interacts with my MS – in very bad ways.
But Most people assume that whatever I’ve got is due to my MS. When often it isn’t. E.g. recently I was having terrible spasms which everyone thought were due to my ms. These spasms went away straight away when my faulty NHS delivered mattress was replaced
2. I wish even more that your ideas about MS being one disease rather than the false distinctions between relapsing remitting – secondary progressive et cetera were more widely accepted.
When this is so, it will surely affect these ridiculous rules we are all subject to about various medications
3, I think any idea about prognosticating about what might possibly be happening could be much more useful if it was thought of in terms of what we might be doing about it. I’m including exercise and diet and mental health measures and comorbidities alongside specific DMTs.
That would be a lot less stigmatising and depressing - and instead emphasise agency
Yes 100%. As we know Anneke at the Alfred in melbourne misdiagnosed me with something, and completely missed something serious. I am honestly happier that another ophthalmologist has found it, knowing what the outlook is likely to be. The same as if my ms was not mild, I would want to know and then you can prioritise certain things while you still have a good quality of life. Patients deserve to know the truth. Anneke v Walt caused me two years of mental hell by missing that serious diagnosis and now that I know what it is I can live with it and plan accordingly.
The assumption is that an individual has the data on which to base a prognosis. With the current state of the NHS it is extremely unlikely that people with MS have regular MRIs, let alone all the other tests mentioned.
Also there is always the patient that "bucks the trend" - I had a gap of over 18 years between my first episode of optic neuritis and the start of "progression".
It’s a blessing and a curse being a trend bucker: on the upside I had 33 years between optic neuritis and ‘progression’ and no noticeable relapses in between (and no knowledge that I had MS so no drugs). On the downside, I’ve declined very quickly since while not being eligible for any DMTs (stable MRIs despite high NFLs)