I’d suggest that it’s the certainty (rather than the uncertainty) that is more concerning to MSers. The certainty that you will never be ‘well’ again. The certainty that you will becoming increasingly disabled - MS is (for certain) a progressive neurodegenerative disease (see EDSS). The certainty that, on average, MS reduces life expectancy (according to researchers) by c.7-10 years, so an MSer can be pretty certain that they won’t be getting a 100th birthday card from the King.
The treatment for MSer certainty / uncertainty is pretty obvious - treatments to stop the worsening disability. This would allow MSers to be able to plan for the future. I would hope that in the next decade we’ll have treatments which will really impact the insidious smouldering causing worsening disability.
I agree and share your hope, but after 30+ years with this disease, and hearing about new treatments and advances endlessly during that time, I'm afraid that at 62, my hope has faded to a slight glimmer in the far distance.
I’m 21 years in and have seen a raft of hopes dashed. The MS Societies promise the world (stop MS, prevent MS, repair the damage) when fundraising, but the trials haven’t panned out yet. The highly effective treatments can shut down relapses, but this isn’t enough. A polypill (or infusion) will come at some stage to tackle the different aspects of the disease, but currently too much money is being made on the anti-relapse drugs. The other certainties with MS are (1) pharma will continue to make huge profits from this disease and (2) neuros will continue to be paid.
I've made a choice to do what I can to get that 100th birthday card. Doing that has a side benefit of fixing a lot of insidious things that were going to shorten my healthspan. I've chosen, despite my disappointment at what I think was the trigger for my MS, to deal with what had me inflamed and susceptible. Despite having MS I'm more fit, more alert, more present and I think I've figured out how to add years to my life.
It’s so so difficult, sometimes I feel I’m living a parallel, life compared to the well folk. As I’ve aged I find it hard with older people, who have age related mobility problems. For instance joint problems. The times I’ll be told “ I can’t walk far now adays) in reality they may be walking to a shop around the shop and home. Someone said, his wife was catching up with me on walking difficulties. She has a stiff knee. I say nothing. And withdraw. I no longer want to educate the ignorant and insensitive. I tell myself regularly, life has no certainty for anyone. However us MSers have a heightened and often daily reminder due to symptoms. Today my only grand daughter is 1. I’m not up to a 4 hour journey, plus loo stop anxieties. So I made a cake, blew the candle out and sent a video. If I had a dodgy knee it would be so much easier.
When I first had symptoms of MS I was paranoid and it was probably worse than the physical symptoms. I was still training to be a dancer and would test myself several times a day to see if I could still walk on my heals and balance on one leg.
This only stopped when my MS got loads worse, I got work touring as a disabled dancer and had the best time of my life. It made me realise that success and happiness isn’t solely about mobility. I no longer worry about what happens next because I know I will cope.
Uncertainty seems to have been the cardinal property of MS since it was first recognised as a distinct condition, (about 180 years ago! )and despite the recent encouraging advances in 'management' it remains so. Just a gentle reminder to the selfie correspondents, researchers also have and continue to have part of that frustrating uncertainty, with effects on their lives! It will of course continue until 'what is really going on in the MS CNS' is finally revealed. A consummation devoutly to be wished. Best wishes for an uncertain but always hopeful 2025.
Very many thanks for your kind remark! Of course we will keep going, just as so many PwMS continue in hope and expectancy. Faith I think is not a feeling but a path to follow......so on we go. Christmas blessings on you and yours!
I am a person who has always been affected by peer pressure - how I am seen with regard to people around me both in physical appearance and behaviour. The MS diagnosis (late-onset relapsing-remitting) put this into sharp relief, the whole uncertainty of the future and the ugliness of disability. The world around me was getting on with life, while I was on the sidelines, isolated with no control over anything and a feeling of doom. My Neuro (you) told me he was more worried about my mental state than my MS. Fast forward 20 years. I've had the best medical help and a helpful employer who enabled me to keep working for 5 years. I am stable and OK apart from a really bad limp. What has completely changed is my mindset vis-a-vis everyone round me. My contemporaries ALL now have things wrong with them and are going through similar patterns of uncertainty, despair etc. I don't yet use a stick, but some of my pals do. The regime I was told (very clearly) to follow has - in a sense - 'balanced the books' with people my age without MS, who are now being told they need to do more exercise. practise mindfulness, get a new hip etc etc. MS has caused me to have a very different life, but I now at last feel able to look other people in the eye.
I find I feel best when I do concentrate on what I can control. And those things are simple. What I eat, exercising and being social. When I'm social, eschew processed foods and exercise I feel good, so good that I don't worry about MS.
You write with so much understandng, as if you can see what is inside pwMS’ thougths.
I also purchased Betaferon, and later Riguximab, with fhe help of my extended family, because I live in Bosnia and fhere is no money for DMTs for everyone who needs it. God I felt so miserable and useless cause I could not afford it (the price od 15 shots was roughly the amount of my monthly salary). Now thank God, I have my DMT via health insurance.
Uncertainty is sometimes devastating. I try to help myself by praying and mindfulness. I gave up on fancy carrier (I still work, but this job is not challenging or has oppurtunities for promotions). I did not want to move abroad when my husband was offered a job in Luxemburg, was too scared of having to start from zero in a foreign place.
Happy holidays prof G and thank you for everything you do for pwMS!
After an emotional spiral earlier this week prompted by bladder symptoms and a general feeling of grief about my life not being the same as it was before my diagnosis three years ago, I really needed to read this.
I find the uncertainty incredibly challenging and frequently end up in worry spirals with bad anxiety. I have changed jobs, moved city to be closer to family, all because of the fear of what may happen and apart from bad vision in one eye i am basically ok.
I recently got some Cognitive Behavoural Therapy from a local MS charity and that has been very helpful in reducing the daily anxiety. As stressful times for me have resulted in relapses it is important to me to have some ways of managing it. It is a slow process but I have experienced improvement so am more hopeful. I would recommend it to everyone. There are helpful resources online if you can't get an appointment with a therapist.
Like many others my diagnosis came just as we had decided to start a family. We had delayed this because of my husbands career - a consultant surgeon so I was already older than I wanted to be and then boom came the diagnosis. I was left with the most negative view of myself and my future (despite securing lemtrada as a first line dmt). I had some bad experiences when sharing the diagnosis with family which made things a lot harder. I had acceptance and commitment therapy with a specialist clinical psychologist to work through these emotions and found the courage and hope to have a child. It was a traumatic pregnancy because of my ruined thyroid from lemtrada and it was all during Covid. I had a double relapse when she was 1 (and a new neuro was certain I had nmosp not ms so I had to go thorough re diagnosis before round 3) and am still battling major thyroid issues so we have been limited to one child but I am so grateful and I don’t view myself in such a negative way any more - although it does fluctuate.
For me the uncertainty I manage comes from ms, from neurologists, from family attitude, and from side effects from my dmt.
A sub-set of MS uncertainty for me is that I cope poorly with any other health anxieties. It's as if my entire emotional coping capacity is tied up with the MS and there is no room for anything else. When something other rears its ugly head I am a total hypochondriac, into worst-case scenarios, feelings of doom and so on. I've got better at managing this over the years and I accept it because I'm sure it's part of the burden of a long-term condition.
I struggle with uncertainty. I feel this is made worse because I have been unable to have a discussion with a neurologist about likely prognosis. I understand that it is impossible to provide this with any accuracy at an individual level. However, if I had been diagnosed with another health condition then I feel that I would have been given an indication of the statically likely outcome for someone with my initial presentation with/without treatment. Your fantastic article “How bad is my multiple sclerosis?” is the closest thing I have found. However, it would really help me to know what people in good, average and poor prognostic groups might expect on average at 5, 10 and 20 years, both in terms of natural history and how high efficacy DMTs might be expected to change this (noting that we don’t yet have all the data on the effects of modern treatment strategies). Is there any research on average outcomes that you could kindly direct me towards?
Hey all, I thought I could manage the uncertainty of MS pretty well, meaning that I had accepted the necessary changes I had to go through. I was a professor at the university, leading my research group, but I had to step down as I found it to be very stressful. I moved to assisting a colleague managing his own group. And that was okay. But last week I got diagnosed with myeloma, and that is difficult to digest. MS uncertainty is something, but cancer uncertainty is at a different level. That keeps me up at night!
Just thinking further about your article Professor G and it is certainly making me reflect. Somehow or another and over time I have just become used to dealing with uncertainty. I think that these days, some 18 years since diagnosis, uncertainty has just become another background symptom of MS. It’s always there to some extent and without being fully aware of it I’m always keeping an eye on how I’m feeling mentally and emotionally and always making sure my anxieties about the impact of MS aren’t running away with me.
I have used counselling before , particularly during one year when my Dad died and I got bad Covid during which my right leg, the one affected most by MS, gave up completely and I couldn’t walk. Counselling does help - somehow or another talking about fears etc to a good counsellor stops them going round and round in your mind.
I do practice mindfulness and have done an online course on this. Again, it is very helpful- just settles the mind on sounds, breathing and clears away any thoughts and fears that are going round and round my mind and in doing so ‘calms emotions’. A quiet mind and emotions leads to a quiet calm immune system?
I think that in some ways I am fortunate in having a love of nature and wildlife. Living in the countryside I can get pleasure in just feeding and watching birds, watching the sun go down or, when it’s not raining on the west side of Scotland, going along paths on my mobility scooter.
I think I suffer from day to day uncertainty and less so from long term uncertainties.
When I need a pee I do have to get to a toilet quickly. At home this is OK but going out can make me very anxious and my mind goes into overdrive: ‘are there easily accessible toilets nearby’ , ‘am I going to end up wetting myself in public?’. This does affect my day to day activities and plans. I suppose that this leads to background longer term worries about ending up with a catheter.
More generally and apart from the above worries, i sort of have a slightly fatalistic outlook about the future and balance my fears about the future impacts of MS with thoughts about how some friends and acquaintances of my age ( in the 70 to 75 years bracket) are developing other health conditions and a few have died . In some weird way part of me thinks ‘ OK just keep myself as healthy as possible and ‘natural’ old age conditions might get me before MS has any dire effects’.
The more optimistic me also thinks ‘ OK, keep looking after yourself and who knows , some remyelination treatments might come along! In the meantime, do everything you can to support brain health - healthy diet etc and follow the mantra ‘what’s good for the heart is good for the brain’.
If you're going to a job interview, drink less liquids beforehand, and wear an adult diaper (a good one) anytime you don't know where the bathroom is, or won't be able to say "excuse me". I just had a TURP (male prostrate problem) to ensure I can avoid a catheter. They are a major cause of sepsis and subsequently death in MS. (sorry, everyone).
Pleased to say that At 71 next year my days of job interviews are over 😀😎. Yes, my Dad in his old age (90s) had a catheter and fairly frequent urinary tract infections. No sepsis though .
I have thought about trying one of those ‘sheath’ catheters (I think that is what they are called). Hey ho, the joys of MS. I guess that in terms of uncertainty, it’s best to think through and become mentally/emotionally accustomed to all possibilities and thus remove some anxieties of uncertainty?
I would always go with "think through", but have often thought about the benefits of being unaware- I mean I had 25-30 years of not worrying about things (was on Betaseron) when I could have been overconcerned about SPMS and being on a "crab" DMT. The overconcern would have gotten me no-where. I'm 67 yesterday. Merry Christmas - Happy Holidays
Uncertainty is a challenge. But hey, I cannot stress about the unknowns out there. There are plenty with or without an MS diagnosis. I learn. I advocate and, hopefully, inspire other fellow MS Warriors along the way. I think the mindset is everything. Every day is different so embrace it the best you can.
Wishing everyone a happy Christmas and a healthy 2025 ahead!
I’d suggest that it’s the certainty (rather than the uncertainty) that is more concerning to MSers. The certainty that you will never be ‘well’ again. The certainty that you will becoming increasingly disabled - MS is (for certain) a progressive neurodegenerative disease (see EDSS). The certainty that, on average, MS reduces life expectancy (according to researchers) by c.7-10 years, so an MSer can be pretty certain that they won’t be getting a 100th birthday card from the King.
The treatment for MSer certainty / uncertainty is pretty obvious - treatments to stop the worsening disability. This would allow MSers to be able to plan for the future. I would hope that in the next decade we’ll have treatments which will really impact the insidious smouldering causing worsening disability.
I agree and share your hope, but after 30+ years with this disease, and hearing about new treatments and advances endlessly during that time, I'm afraid that at 62, my hope has faded to a slight glimmer in the far distance.
I’m 21 years in and have seen a raft of hopes dashed. The MS Societies promise the world (stop MS, prevent MS, repair the damage) when fundraising, but the trials haven’t panned out yet. The highly effective treatments can shut down relapses, but this isn’t enough. A polypill (or infusion) will come at some stage to tackle the different aspects of the disease, but currently too much money is being made on the anti-relapse drugs. The other certainties with MS are (1) pharma will continue to make huge profits from this disease and (2) neuros will continue to be paid.
I've made a choice to do what I can to get that 100th birthday card. Doing that has a side benefit of fixing a lot of insidious things that were going to shorten my healthspan. I've chosen, despite my disappointment at what I think was the trigger for my MS, to deal with what had me inflamed and susceptible. Despite having MS I'm more fit, more alert, more present and I think I've figured out how to add years to my life.
Best of luck.
It’s so so difficult, sometimes I feel I’m living a parallel, life compared to the well folk. As I’ve aged I find it hard with older people, who have age related mobility problems. For instance joint problems. The times I’ll be told “ I can’t walk far now adays) in reality they may be walking to a shop around the shop and home. Someone said, his wife was catching up with me on walking difficulties. She has a stiff knee. I say nothing. And withdraw. I no longer want to educate the ignorant and insensitive. I tell myself regularly, life has no certainty for anyone. However us MSers have a heightened and often daily reminder due to symptoms. Today my only grand daughter is 1. I’m not up to a 4 hour journey, plus loo stop anxieties. So I made a cake, blew the candle out and sent a video. If I had a dodgy knee it would be so much easier.
Really good article. Thank you.
When I first had symptoms of MS I was paranoid and it was probably worse than the physical symptoms. I was still training to be a dancer and would test myself several times a day to see if I could still walk on my heals and balance on one leg.
This only stopped when my MS got loads worse, I got work touring as a disabled dancer and had the best time of my life. It made me realise that success and happiness isn’t solely about mobility. I no longer worry about what happens next because I know I will cope.
Uncertainty seems to have been the cardinal property of MS since it was first recognised as a distinct condition, (about 180 years ago! )and despite the recent encouraging advances in 'management' it remains so. Just a gentle reminder to the selfie correspondents, researchers also have and continue to have part of that frustrating uncertainty, with effects on their lives! It will of course continue until 'what is really going on in the MS CNS' is finally revealed. A consummation devoutly to be wished. Best wishes for an uncertain but always hopeful 2025.
Thank you for your continuing research.
Very many thanks for your kind remark! Of course we will keep going, just as so many PwMS continue in hope and expectancy. Faith I think is not a feeling but a path to follow......so on we go. Christmas blessings on you and yours!
I am a person who has always been affected by peer pressure - how I am seen with regard to people around me both in physical appearance and behaviour. The MS diagnosis (late-onset relapsing-remitting) put this into sharp relief, the whole uncertainty of the future and the ugliness of disability. The world around me was getting on with life, while I was on the sidelines, isolated with no control over anything and a feeling of doom. My Neuro (you) told me he was more worried about my mental state than my MS. Fast forward 20 years. I've had the best medical help and a helpful employer who enabled me to keep working for 5 years. I am stable and OK apart from a really bad limp. What has completely changed is my mindset vis-a-vis everyone round me. My contemporaries ALL now have things wrong with them and are going through similar patterns of uncertainty, despair etc. I don't yet use a stick, but some of my pals do. The regime I was told (very clearly) to follow has - in a sense - 'balanced the books' with people my age without MS, who are now being told they need to do more exercise. practise mindfulness, get a new hip etc etc. MS has caused me to have a very different life, but I now at last feel able to look other people in the eye.
I find I feel best when I do concentrate on what I can control. And those things are simple. What I eat, exercising and being social. When I'm social, eschew processed foods and exercise I feel good, so good that I don't worry about MS.
You write with so much understandng, as if you can see what is inside pwMS’ thougths.
I also purchased Betaferon, and later Riguximab, with fhe help of my extended family, because I live in Bosnia and fhere is no money for DMTs for everyone who needs it. God I felt so miserable and useless cause I could not afford it (the price od 15 shots was roughly the amount of my monthly salary). Now thank God, I have my DMT via health insurance.
Uncertainty is sometimes devastating. I try to help myself by praying and mindfulness. I gave up on fancy carrier (I still work, but this job is not challenging or has oppurtunities for promotions). I did not want to move abroad when my husband was offered a job in Luxemburg, was too scared of having to start from zero in a foreign place.
Happy holidays prof G and thank you for everything you do for pwMS!
I am so very pleased that you managed to get treatment through your health insurance !
Thank you so much! MS is world shattering, and much more so when you have to worry about paying for DMTs!
After an emotional spiral earlier this week prompted by bladder symptoms and a general feeling of grief about my life not being the same as it was before my diagnosis three years ago, I really needed to read this.
I find the uncertainty incredibly challenging and frequently end up in worry spirals with bad anxiety. I have changed jobs, moved city to be closer to family, all because of the fear of what may happen and apart from bad vision in one eye i am basically ok.
I recently got some Cognitive Behavoural Therapy from a local MS charity and that has been very helpful in reducing the daily anxiety. As stressful times for me have resulted in relapses it is important to me to have some ways of managing it. It is a slow process but I have experienced improvement so am more hopeful. I would recommend it to everyone. There are helpful resources online if you can't get an appointment with a therapist.
Like many others my diagnosis came just as we had decided to start a family. We had delayed this because of my husbands career - a consultant surgeon so I was already older than I wanted to be and then boom came the diagnosis. I was left with the most negative view of myself and my future (despite securing lemtrada as a first line dmt). I had some bad experiences when sharing the diagnosis with family which made things a lot harder. I had acceptance and commitment therapy with a specialist clinical psychologist to work through these emotions and found the courage and hope to have a child. It was a traumatic pregnancy because of my ruined thyroid from lemtrada and it was all during Covid. I had a double relapse when she was 1 (and a new neuro was certain I had nmosp not ms so I had to go thorough re diagnosis before round 3) and am still battling major thyroid issues so we have been limited to one child but I am so grateful and I don’t view myself in such a negative way any more - although it does fluctuate.
For me the uncertainty I manage comes from ms, from neurologists, from family attitude, and from side effects from my dmt.
A sub-set of MS uncertainty for me is that I cope poorly with any other health anxieties. It's as if my entire emotional coping capacity is tied up with the MS and there is no room for anything else. When something other rears its ugly head I am a total hypochondriac, into worst-case scenarios, feelings of doom and so on. I've got better at managing this over the years and I accept it because I'm sure it's part of the burden of a long-term condition.
I struggle with uncertainty. I feel this is made worse because I have been unable to have a discussion with a neurologist about likely prognosis. I understand that it is impossible to provide this with any accuracy at an individual level. However, if I had been diagnosed with another health condition then I feel that I would have been given an indication of the statically likely outcome for someone with my initial presentation with/without treatment. Your fantastic article “How bad is my multiple sclerosis?” is the closest thing I have found. However, it would really help me to know what people in good, average and poor prognostic groups might expect on average at 5, 10 and 20 years, both in terms of natural history and how high efficacy DMTs might be expected to change this (noting that we don’t yet have all the data on the effects of modern treatment strategies). Is there any research on average outcomes that you could kindly direct me towards?
You might find volume one of the MS book helpful, if you haven't seen it yet: https://msselfie.co.uk/wp-content/uploads/2024/10/Vol-1_Deciding-on-your-treatment-strategy_Final_bookmarked.pdf
Hey all, I thought I could manage the uncertainty of MS pretty well, meaning that I had accepted the necessary changes I had to go through. I was a professor at the university, leading my research group, but I had to step down as I found it to be very stressful. I moved to assisting a colleague managing his own group. And that was okay. But last week I got diagnosed with myeloma, and that is difficult to digest. MS uncertainty is something, but cancer uncertainty is at a different level. That keeps me up at night!
Just thinking further about your article Professor G and it is certainly making me reflect. Somehow or another and over time I have just become used to dealing with uncertainty. I think that these days, some 18 years since diagnosis, uncertainty has just become another background symptom of MS. It’s always there to some extent and without being fully aware of it I’m always keeping an eye on how I’m feeling mentally and emotionally and always making sure my anxieties about the impact of MS aren’t running away with me.
I have used counselling before , particularly during one year when my Dad died and I got bad Covid during which my right leg, the one affected most by MS, gave up completely and I couldn’t walk. Counselling does help - somehow or another talking about fears etc to a good counsellor stops them going round and round in your mind.
I do practice mindfulness and have done an online course on this. Again, it is very helpful- just settles the mind on sounds, breathing and clears away any thoughts and fears that are going round and round my mind and in doing so ‘calms emotions’. A quiet mind and emotions leads to a quiet calm immune system?
I think that in some ways I am fortunate in having a love of nature and wildlife. Living in the countryside I can get pleasure in just feeding and watching birds, watching the sun go down or, when it’s not raining on the west side of Scotland, going along paths on my mobility scooter.
I think I suffer from day to day uncertainty and less so from long term uncertainties.
When I need a pee I do have to get to a toilet quickly. At home this is OK but going out can make me very anxious and my mind goes into overdrive: ‘are there easily accessible toilets nearby’ , ‘am I going to end up wetting myself in public?’. This does affect my day to day activities and plans. I suppose that this leads to background longer term worries about ending up with a catheter.
More generally and apart from the above worries, i sort of have a slightly fatalistic outlook about the future and balance my fears about the future impacts of MS with thoughts about how some friends and acquaintances of my age ( in the 70 to 75 years bracket) are developing other health conditions and a few have died . In some weird way part of me thinks ‘ OK just keep myself as healthy as possible and ‘natural’ old age conditions might get me before MS has any dire effects’.
The more optimistic me also thinks ‘ OK, keep looking after yourself and who knows , some remyelination treatments might come along! In the meantime, do everything you can to support brain health - healthy diet etc and follow the mantra ‘what’s good for the heart is good for the brain’.
If you're going to a job interview, drink less liquids beforehand, and wear an adult diaper (a good one) anytime you don't know where the bathroom is, or won't be able to say "excuse me". I just had a TURP (male prostrate problem) to ensure I can avoid a catheter. They are a major cause of sepsis and subsequently death in MS. (sorry, everyone).
Pleased to say that At 71 next year my days of job interviews are over 😀😎. Yes, my Dad in his old age (90s) had a catheter and fairly frequent urinary tract infections. No sepsis though .
I have thought about trying one of those ‘sheath’ catheters (I think that is what they are called). Hey ho, the joys of MS. I guess that in terms of uncertainty, it’s best to think through and become mentally/emotionally accustomed to all possibilities and thus remove some anxieties of uncertainty?
I would always go with "think through", but have often thought about the benefits of being unaware- I mean I had 25-30 years of not worrying about things (was on Betaseron) when I could have been overconcerned about SPMS and being on a "crab" DMT. The overconcern would have gotten me no-where. I'm 67 yesterday. Merry Christmas - Happy Holidays
Uncertainty is a challenge. But hey, I cannot stress about the unknowns out there. There are plenty with or without an MS diagnosis. I learn. I advocate and, hopefully, inspire other fellow MS Warriors along the way. I think the mindset is everything. Every day is different so embrace it the best you can.
Wishing everyone a happy Christmas and a healthy 2025 ahead!
Xx