Of course uncertainty is a big issue (once you've passed the denial phase).
Not only for the general issues mentioned, but also in very practical and concrete questions, that can be different for many patients.
For instance, at the moment I'm considering buying a new home. I'm looking for a house that I should be able to live in for some time, but I have no idea how my disability wil evolve. I don't know how much longer I will be able to work, so I don't know how much I can afford.
On a smaller scale: I want to meet with a friend, but I don't know how my fatigue will be. I don't want to make her come just for half an hour, but if I exhaust myself, I won't be functioning the next few days and my husband will have to do everything (for the x-th time).
These kind of things are just not something a neuro/nurse or any other third party can really help with. It's just an additional burden of having MS.
For a lot of the questions mentioned, I feel neuros evidently have a responsability to inform pwMS as best as possible. But they cannot offer certainty where there is none. Nor should they.
I get that neuros want to help, but I don't see how it's possible for neuros to solve 'the problem of uncertainty'?
Closed leading questions aren’t really that helpful other than a broad sense of what areas concern patients more - I wonder what people without MS would answer for some of them that are generic life questions like planning for the future ?!
MS is such a variable illness affecting people at different ages and with different intensities plus each individual has their own outlook, personality, support system and own specific vulnerabilities.
I think it would be much better if HCPs just asked about fears and hopes and how they could support the pwMS on a spiritual, psychological and practical level. But they don’t seem to have any time. Despite being diagnosed very young, no one professional has ever asked my son about his emotions, if he is scared or confused about what’s happening to him or how they could support him with that. I was astounded how his psychological health was of entirely no interest to anyone.
I work in palliative care and have often thought a palliative approach would be useful even at the start of an MS diagnosis. Holistic care, advance care planning discussions, support for the family and carers and a hope for the best but plan for the worst parallel planning concept.
Shouldn’t this issue be flipped. It’s not the uncertainty that’s the issue, it’s the certainty:
- the certainty that you will get worse / more disabled (it’s a progressive neurodegenerative disease);
- the certainty that you will go to bed with this disease tonight and wake up with this disease tomorrow;
- the certainty that you will need mobility aids (cane, wheelchair…) once you have had this disease for 15, 20 years;
- the certainty that you won’t (highly unlikely) be working until normal retirement age (60-65);
- the certainty that the retirement you dreamed of / saved for (playing tennis, hiking across the Alps….) won’t come to pass.
Of course effective treatments to stop the processes driving the continuous neurodegenerative would help address some of this certainty / uncertainty. Unfortunately, one of the other certainties with this disease is research progress is painfully slow and therapies to shut it down are only ever “on the horizon”.
MS as a disease is uncertain in itself. It affects everyone differently so looking at the uncertainty for each individual would be, as you say, a Herculean task. Generalising might be helpful for some pwms but the uncertainty will always be there. Planning events such as holidays, days out or parties are always a worry because deep down you know it might all go wrong at the last minute and plans can be ruined. So many months of worry and uncertainty can then unfold and then you wonder if it’s all worth it. Self doubt, depression, anxiety, low self-esteem, which I’m sure has all been mentioned, can then unfold.
Living the rest of our lives with uncertainty is definitely a given for someone with MS. How to get used to living with uncertainty is the big question.
In my experience MS Selfie reduces uncertainty by being clear, concise and honest in its posts. I do feel a lot of neurologists need to learn from you and take on the same approach.
Most of this article seems to be about communication/DMTs. A quick look at MS forums shows there are issues there.
But this blog seems to focus on the wider issue of long-term prognosis.
I found it devastating to be told that I had dementia (MS is dementia in my book - brain degeneration) that would progress, inevitably, but we don't know when. I understand it knocks an average of about 7 years off my life expectancy. But that's not half as hard as the unpredictability of the timing. I know a lot of people worry about raising their children. The entry above says very little about finance: Will I be able to work? Will I have a roof over my head or become homeless? How will I save for a pension? Will I apply for benefits or is that process too much to bear emotionally? To plan, financially, we need to know how long we will work and how long we will live (and need to pay for ourselves). Doctors seem reluctant to talk about this, perhaps because they simply don't know.
When I was diagnosed I asked whether I might have to retire early. The neurologist just said vaguely, "oh, no..., no...." What, really? So I can expect on average to work to my statutory retirement age of 68? I'm going to plan my finances around this, so it's a serious question. Perhaps people with NHS pensions don't realise...
It is also complicated for people like me who intend to use assisted dying to end our lives when we feel we have had enough. I have a rough idea what that would be in terms of incapacity but I don't know how long I have until then. This is a very practical issue. I need to know an expected working life/actual life to plan for retirement. Without this information people with MS will be worse off financially.
Apart from work, I think many people with MS wonder "How long will I be able to...dance/run/hike/do advanced maths/go surfing/ride a horse/play rugby/read novels/go out for a drink with friends without wetting myself...". Overnight, life is turned on its head.
Denial is not always a bad thing. To me some denial is vital, otherwise I would cease to function. It is actually very hard to achieve, but if you can manage to be in denial it means you can make something of your life now, without having MS take over.
I was also someone who threw myself into research - I recognise the reaction described above. It is an attempt to get some control, feel I am doing what I can and find some crumbs of hope for the future. The downsides of this: 1) It does take over your life, 2) risk of going down rabbit holes...needs a reliable neurologist to correct and 3) I think it can lead to excess optimism - that cure is always "just" round the corner. Medical research moves more slowly than we age and so many treatments in progress will be too late for those of us diagnosed now. Brains are difficult: hard to examine, hard to operate on, don't renew themselves like skin. We may cling to our neurologists, desperately investing them with god-like powers, but that's unfair. So much is a matter of luck and the doctor cannot work miracles.
Would a clearer prognosis help? It would for things like financial planning. But if the news were very bad, and there were nothing "more" I could do about it, perhaps I would regret knowing. Patients who say they "feel fine now" so don't want a DMT may need to faced with some nasty realities, but for those of us who are already doing what we can, I'm not sure more knowledge is always a good thing.
What would help - oh, so much! - is to feel the NHS were on-side and supportive. It's bad enough to be diagnosed with MS. But then you find: The NHS is broken. Too many staff are apathetic, burnt out inefficient and unhelpful. As a patient you have to make dozens of calls to correct errors. There is no sense of service whatsoever, at most a litigation-avoidance culture. When it comes to the doctors, a proportion of clinicians seem to be wildly incompetent/out of date with current treatment: really sad, really scary. There are also committed, dedicated neurologists but they sometimes seem to be rather at loggerheads with each other. As a patient exposed to this, you don't know where to turn, whom to trust.
What I would like to see for future generations of MSers is not (just) "new treatments", but an NHCS (health AND care) where all staff - admin and clinical - know how devastating MS is and can say: You have this awful diagnosis through no fault of your own. We're so sorry. But... you are not alone. We will be with you, every step of the way. It is our ambition to enable you to live your life to the full, for as long as we possibly can. And if you do decide (clearly, consistently) that you have had enough, we will help you through a peaceful death.
5 years after being diagnosed with MS I was diagnosed with breast cancer. Immediately after my cancer diagnosis there was a lot of support and a lot of action unlike after my MS diagnosis where I was sent away and told to get on with it as I wasn't at that time eligible for DMTs, the only advice seemed to be live your life as normal and see what happens, when actually this is the time when you need most support dealing with it emotionally (fear or denial) and also preparing for the future. Because of course you will get worse. I was lucky enough to be recommended a really good Iyengar yoga teacher who knew a little about MS and I have no doubt that the reason I remain mobile is because of this. Neurologists should be able to prescribe such treatments as well as drugs, and do this at diagnosis. In fact it is my cognition that has led me to ill health retirement, and yet no one ever assessed this until I asked my OT about help with getting my teachers pension. The uncertainty of how long my brain will work well enough is very frightening. There is a lot of uncertainty involved with cancer too, has it spread? will it come back? But it taught me to live for now and try not to worry about tomorrow.
I am shocked that insurers are happy to exclude healthy children from life insurance for mortgages. My daughter, aged 38, has been excluded from obtaining life insurance on the basis of my MS. I think this is absurd since cancers more likely. Her mortage is in her husbands sole name so yet another example of how women are disadvantaged by shadow practices in the insurance industry.
Firstly I think it is bit like giving birth and becoming a parent, your own experience is completely unique, advice given may not apply to you, you can pick our bits that are useful. Also when first diagnosed you may not have particularly bad symptoms, so don't even want to think about the future, plus you don't know how the disease will develop for you. Surely it would never occur to someone some of the difficult symptoms they may encounter.
Uncertainty about our disease course is of course profoundly psychologically unsettling . I have had RRMS for 10 years . In the first few years I was having repeated frequent relapses while trying to work and look after young family . I since had to stop work . There is no default offer of psychological help and it seems to me that this is a mistake . If we can be helped to learn to live better with our illness we will engage with healthier behaviours , have better mental health , improved coping for families with a PWMS. I was lucky to have alemtuzumab and it halted the relapses so I have been given some stability and hope. If I had known this might happen 10 years ago I might not have felt as despairing after diagnosis . I think counselling should be offered as standard & I think it would be cost effective as it would improve outcomes .
I couldn’t agree more that for me the level of uncertainty is sky high and it has not improved since my first symptom 25 years ago. With MS this uncertainty along with a seemingly laissez faire way of dealing with the disease is for me heartbreaking and a stark realisation of my own well-being and future “life”. Even for a layman it seems clear that the sooner MS is treated the better. I’ve never heard it being said to delay treatment of Cancer.
The cost of the drugs is surely offset by the extra funds needed for the extra funds needed to look after a failing untreated MS body.
Don’t feel those questions are massively addressing the uncertainty you mention. They are solely focused on whether the HCP have supported the patients and the patients feel the treatment is helping. A scale to ask about fears related to likely disease progression and specific symptoms would be more useful for us pts-but only if the MS team could then support the results
Of course there is uncertainty. I have been progressing downhill for the past 2 years (since covid) and the main question I ask myself is When will the progression stop,if ever? Will I become disabled? Who will take care of me when my husband is at work? Oh God, better not to say all the things that go through my head… HCPs in Bosnia are not of any help
Reading about the disease, especially MS sslfie, really helps, and I believe knowlegde is power. Thank you for everything you do for pwMS prof G!
Uncertainty is really difficult, but it's exacerbated by practical factors which could be addressed - for example the lack of appropriate housing in the UK.
If builders were compelled to build many more future proofed homes at the heart of communities and with accessible public transport a lot of stress about the future would be alleviated.
People need to be able to establish strong links with neighbours and the local community while they are physically able, and having a 'forever home' at an early stage would help enormously. No more worry about having to move and lose support networks 'if my legs go' etc
Of course uncertainty is a big issue (once you've passed the denial phase).
Not only for the general issues mentioned, but also in very practical and concrete questions, that can be different for many patients.
For instance, at the moment I'm considering buying a new home. I'm looking for a house that I should be able to live in for some time, but I have no idea how my disability wil evolve. I don't know how much longer I will be able to work, so I don't know how much I can afford.
On a smaller scale: I want to meet with a friend, but I don't know how my fatigue will be. I don't want to make her come just for half an hour, but if I exhaust myself, I won't be functioning the next few days and my husband will have to do everything (for the x-th time).
These kind of things are just not something a neuro/nurse or any other third party can really help with. It's just an additional burden of having MS.
For a lot of the questions mentioned, I feel neuros evidently have a responsability to inform pwMS as best as possible. But they cannot offer certainty where there is none. Nor should they.
I get that neuros want to help, but I don't see how it's possible for neuros to solve 'the problem of uncertainty'?
Closed leading questions aren’t really that helpful other than a broad sense of what areas concern patients more - I wonder what people without MS would answer for some of them that are generic life questions like planning for the future ?!
MS is such a variable illness affecting people at different ages and with different intensities plus each individual has their own outlook, personality, support system and own specific vulnerabilities.
I think it would be much better if HCPs just asked about fears and hopes and how they could support the pwMS on a spiritual, psychological and practical level. But they don’t seem to have any time. Despite being diagnosed very young, no one professional has ever asked my son about his emotions, if he is scared or confused about what’s happening to him or how they could support him with that. I was astounded how his psychological health was of entirely no interest to anyone.
I work in palliative care and have often thought a palliative approach would be useful even at the start of an MS diagnosis. Holistic care, advance care planning discussions, support for the family and carers and a hope for the best but plan for the worst parallel planning concept.
Shouldn’t this issue be flipped. It’s not the uncertainty that’s the issue, it’s the certainty:
- the certainty that you will get worse / more disabled (it’s a progressive neurodegenerative disease);
- the certainty that you will go to bed with this disease tonight and wake up with this disease tomorrow;
- the certainty that you will need mobility aids (cane, wheelchair…) once you have had this disease for 15, 20 years;
- the certainty that you won’t (highly unlikely) be working until normal retirement age (60-65);
- the certainty that the retirement you dreamed of / saved for (playing tennis, hiking across the Alps….) won’t come to pass.
Of course effective treatments to stop the processes driving the continuous neurodegenerative would help address some of this certainty / uncertainty. Unfortunately, one of the other certainties with this disease is research progress is painfully slow and therapies to shut it down are only ever “on the horizon”.
MS as a disease is uncertain in itself. It affects everyone differently so looking at the uncertainty for each individual would be, as you say, a Herculean task. Generalising might be helpful for some pwms but the uncertainty will always be there. Planning events such as holidays, days out or parties are always a worry because deep down you know it might all go wrong at the last minute and plans can be ruined. So many months of worry and uncertainty can then unfold and then you wonder if it’s all worth it. Self doubt, depression, anxiety, low self-esteem, which I’m sure has all been mentioned, can then unfold.
Living the rest of our lives with uncertainty is definitely a given for someone with MS. How to get used to living with uncertainty is the big question.
In my experience MS Selfie reduces uncertainty by being clear, concise and honest in its posts. I do feel a lot of neurologists need to learn from you and take on the same approach.
Most of this article seems to be about communication/DMTs. A quick look at MS forums shows there are issues there.
But this blog seems to focus on the wider issue of long-term prognosis.
I found it devastating to be told that I had dementia (MS is dementia in my book - brain degeneration) that would progress, inevitably, but we don't know when. I understand it knocks an average of about 7 years off my life expectancy. But that's not half as hard as the unpredictability of the timing. I know a lot of people worry about raising their children. The entry above says very little about finance: Will I be able to work? Will I have a roof over my head or become homeless? How will I save for a pension? Will I apply for benefits or is that process too much to bear emotionally? To plan, financially, we need to know how long we will work and how long we will live (and need to pay for ourselves). Doctors seem reluctant to talk about this, perhaps because they simply don't know.
When I was diagnosed I asked whether I might have to retire early. The neurologist just said vaguely, "oh, no..., no...." What, really? So I can expect on average to work to my statutory retirement age of 68? I'm going to plan my finances around this, so it's a serious question. Perhaps people with NHS pensions don't realise...
It is also complicated for people like me who intend to use assisted dying to end our lives when we feel we have had enough. I have a rough idea what that would be in terms of incapacity but I don't know how long I have until then. This is a very practical issue. I need to know an expected working life/actual life to plan for retirement. Without this information people with MS will be worse off financially.
Apart from work, I think many people with MS wonder "How long will I be able to...dance/run/hike/do advanced maths/go surfing/ride a horse/play rugby/read novels/go out for a drink with friends without wetting myself...". Overnight, life is turned on its head.
Denial is not always a bad thing. To me some denial is vital, otherwise I would cease to function. It is actually very hard to achieve, but if you can manage to be in denial it means you can make something of your life now, without having MS take over.
I was also someone who threw myself into research - I recognise the reaction described above. It is an attempt to get some control, feel I am doing what I can and find some crumbs of hope for the future. The downsides of this: 1) It does take over your life, 2) risk of going down rabbit holes...needs a reliable neurologist to correct and 3) I think it can lead to excess optimism - that cure is always "just" round the corner. Medical research moves more slowly than we age and so many treatments in progress will be too late for those of us diagnosed now. Brains are difficult: hard to examine, hard to operate on, don't renew themselves like skin. We may cling to our neurologists, desperately investing them with god-like powers, but that's unfair. So much is a matter of luck and the doctor cannot work miracles.
Would a clearer prognosis help? It would for things like financial planning. But if the news were very bad, and there were nothing "more" I could do about it, perhaps I would regret knowing. Patients who say they "feel fine now" so don't want a DMT may need to faced with some nasty realities, but for those of us who are already doing what we can, I'm not sure more knowledge is always a good thing.
What would help - oh, so much! - is to feel the NHS were on-side and supportive. It's bad enough to be diagnosed with MS. But then you find: The NHS is broken. Too many staff are apathetic, burnt out inefficient and unhelpful. As a patient you have to make dozens of calls to correct errors. There is no sense of service whatsoever, at most a litigation-avoidance culture. When it comes to the doctors, a proportion of clinicians seem to be wildly incompetent/out of date with current treatment: really sad, really scary. There are also committed, dedicated neurologists but they sometimes seem to be rather at loggerheads with each other. As a patient exposed to this, you don't know where to turn, whom to trust.
What I would like to see for future generations of MSers is not (just) "new treatments", but an NHCS (health AND care) where all staff - admin and clinical - know how devastating MS is and can say: You have this awful diagnosis through no fault of your own. We're so sorry. But... you are not alone. We will be with you, every step of the way. It is our ambition to enable you to live your life to the full, for as long as we possibly can. And if you do decide (clearly, consistently) that you have had enough, we will help you through a peaceful death.
5 years after being diagnosed with MS I was diagnosed with breast cancer. Immediately after my cancer diagnosis there was a lot of support and a lot of action unlike after my MS diagnosis where I was sent away and told to get on with it as I wasn't at that time eligible for DMTs, the only advice seemed to be live your life as normal and see what happens, when actually this is the time when you need most support dealing with it emotionally (fear or denial) and also preparing for the future. Because of course you will get worse. I was lucky enough to be recommended a really good Iyengar yoga teacher who knew a little about MS and I have no doubt that the reason I remain mobile is because of this. Neurologists should be able to prescribe such treatments as well as drugs, and do this at diagnosis. In fact it is my cognition that has led me to ill health retirement, and yet no one ever assessed this until I asked my OT about help with getting my teachers pension. The uncertainty of how long my brain will work well enough is very frightening. There is a lot of uncertainty involved with cancer too, has it spread? will it come back? But it taught me to live for now and try not to worry about tomorrow.
I am shocked that insurers are happy to exclude healthy children from life insurance for mortgages. My daughter, aged 38, has been excluded from obtaining life insurance on the basis of my MS. I think this is absurd since cancers more likely. Her mortage is in her husbands sole name so yet another example of how women are disadvantaged by shadow practices in the insurance industry.
Firstly I think it is bit like giving birth and becoming a parent, your own experience is completely unique, advice given may not apply to you, you can pick our bits that are useful. Also when first diagnosed you may not have particularly bad symptoms, so don't even want to think about the future, plus you don't know how the disease will develop for you. Surely it would never occur to someone some of the difficult symptoms they may encounter.
Uncertainty about our disease course is of course profoundly psychologically unsettling . I have had RRMS for 10 years . In the first few years I was having repeated frequent relapses while trying to work and look after young family . I since had to stop work . There is no default offer of psychological help and it seems to me that this is a mistake . If we can be helped to learn to live better with our illness we will engage with healthier behaviours , have better mental health , improved coping for families with a PWMS. I was lucky to have alemtuzumab and it halted the relapses so I have been given some stability and hope. If I had known this might happen 10 years ago I might not have felt as despairing after diagnosis . I think counselling should be offered as standard & I think it would be cost effective as it would improve outcomes .
Massive issue. So much anxiety arrived with diagnosis.
I couldn’t agree more that for me the level of uncertainty is sky high and it has not improved since my first symptom 25 years ago. With MS this uncertainty along with a seemingly laissez faire way of dealing with the disease is for me heartbreaking and a stark realisation of my own well-being and future “life”. Even for a layman it seems clear that the sooner MS is treated the better. I’ve never heard it being said to delay treatment of Cancer.
The cost of the drugs is surely offset by the extra funds needed for the extra funds needed to look after a failing untreated MS body.
Its only MS
Don’t feel those questions are massively addressing the uncertainty you mention. They are solely focused on whether the HCP have supported the patients and the patients feel the treatment is helping. A scale to ask about fears related to likely disease progression and specific symptoms would be more useful for us pts-but only if the MS team could then support the results
The answer to the question in the post’s title is, ‘WTF do you think?’
Of course there is uncertainty. I have been progressing downhill for the past 2 years (since covid) and the main question I ask myself is When will the progression stop,if ever? Will I become disabled? Who will take care of me when my husband is at work? Oh God, better not to say all the things that go through my head… HCPs in Bosnia are not of any help
Reading about the disease, especially MS sslfie, really helps, and I believe knowlegde is power. Thank you for everything you do for pwMS prof G!
Uncertainty is really difficult, but it's exacerbated by practical factors which could be addressed - for example the lack of appropriate housing in the UK.
If builders were compelled to build many more future proofed homes at the heart of communities and with accessible public transport a lot of stress about the future would be alleviated.
People need to be able to establish strong links with neighbours and the local community while they are physically able, and having a 'forever home' at an early stage would help enormously. No more worry about having to move and lose support networks 'if my legs go' etc