Life is inherently uncertain. I remember that from day 1 of my diagnosis my mind was telling me “Ah well, I could get run over by a bus tomorrow”. Very cliché, I know. My ex-husband’s response to my diagnosis was “What do we do now? The lady round the corner with MS, her husband left her” I thanked him for his support, and told him “We go home and get on with life.” Just over 4 years later, I left him and I have never looked back.
My diagnostic journey lasted about 5 years. Very poor vision in my right eye due to Optic Neuritis landed me in the emergency eye clinic on Saturday morning. Months of tests followed, all of which were inconclusive. This health MOT included an MRI of my brain which I have seen, there is literally nothing visible, just grey matter. The only conclusion was “you might have a slightly high cholesterol level” My symptoms had disappeared, so I was told to “go away, and come back if it happens again”. Three years later I returned and had another health MOT. This time the MRI showed 3 small white patches in my brain. “Hmm, they weren’t there last time”.
I suppose I could be upset that 2nd time around, radiology told my GP that “there were some changes on my brain MRI, but not indicative of a chronic condition such as MS”, and, in August, a Neurology Registrar examined me and said “she was going to check with her Consultant, but there didn’t seem to be much to say”, but medics are humans, young doctors need to learn, and the body is a complicated biological machine. The Consultant diagnosed MS on 17/12/2010, great Christmas present!
I do not believe that an earlier diagnosis would have been better or made any difference to the outcome. Over the last year I have been reclassified as Secondary Progressive MS and, following various tests to ensure my safety, am now 10 days into my first DMT: Siponimod. I feel lucky that, 14 years later, I am still walking around, I was able to complete my Maths degree at the age of 45 in 2012 and now teach Maths at sixth form college.
I can imagine! I stayed for years while I had low / no income as a stay at home Mum. When I left, my ex said "It all went wrong when you got diagnosed with MS". It was wrong long before that!
I cope with uncertainty by focusing on living each day as it comes, and putting myself first. I have to admit I have got more selfish! I have recently been reading Gabor Mate and he believes that psychological factors play a big role in autoimmune disorders, so I am kind to myself now before being kind to others.
I have also had breast cancer and this diagnosis is the one that was harder to deal with. I have learned to accept that I may have a shorter life than others, than the younger me expected, but it will be longer than many others too. And I'm going to make darn sure I make the most of it. And I do everything possible to keep my mind and body healthy.
Again such good advice and insight into an uncertain picture. The only thing I would add from the patients perspective is that sometimes when a diagnosis has taken a very long time despite an obvious MS presentation, the patient is greatly helped by an apology - "sorry its taken so long" " sorry you should been diagnosed earlier" or "sorry you weren't heard about your worries". This helps patients move forward, but I suspect it is discouraged by NHS managers. My MS diagnosis was within 4 weeks and no problem, including the uncertainty. My nana had MS and I have seen first hand what my future could be. My cancer diagnosis was an entirely different story, and has led to an entirely different response to the uncertainty I live with now. "Sorry" goes a long way in all aspects of life.
Yes, I agree with an apology when there is something to apologise about, i.e., a clinical or healthcare system error. But sometimes, it takes watchful waiting for MS to declare itself diagnostically, but the latter needs to be explained to the patient so they understand what is happening and a plan needs to be done to expedite future visits if the patient develops new symptoms.
I imagine that "knowing first hand what the future could be" could be very scary, depending on how your Nana was affected by MS and how she dealt with it. My Mum was "disabled", but not by MS, from her birth. I'm sorry if you don't like the term disabled but there wasn't a more PC to describe her situation when I grew up in the 1970s and I feel no need to change it. What matters is she taught me to live the life I have with dignity but with maybe a little too strong an emphasis on not asking for or accepting help. Her 4 children, were independent from a young age and were expected to "muck in" to keep the family functioning. We took it in turns to cook and shop, and enable every member of the family to achieve their desires. We were often out and about without Mum or Dad, who was at work. It's just how life was, I'm the youngest, I never knew any different.
My coping mechanism has been gratitude. Thank God I have a job where I am sat down (although that has a knock on effect). Feedback to my MS team how the process has affected me psychologically etc., Hopefully this helps to improve services. I complete every survey I can on all MS sites MS UK etc., and this will add insight. I have cried a lot too 😌
Thank you for this. It covers so much. I have no idea how long I have had the disease, but oddities came and they went for so many years. I initially had a real gaslighter neurologist whom I left due to the pure waste of time, and stuck with my, at the time, brilliant pit bull of a PCP, who believed that MS is essentially a subclinical disease. Early on, I had no uncertainty! (In the wayback machine, it was the betaseron lottery.) The MS Society showed us all riding bikes and running marathons! It looked like Oprah! I was finally definitively diagnosed with MS after perhaps 5 ? years of dithering, and I was diagnosed with an aggressive cancer within months. I wish that MS were treated as seriously as cancer!
My uncertainty with the future is now living the obvious decline and parsing out the legacy effects of whopping chemo and smouldering MS. Cerebellar involvement, brain stem, bladder, bowel, spasticity loom large in the future I have left to live. (And add a small TIA to the...cerebellum!) Meditation keeps me here, now, sane. And let’s face it: ya play the cards yer dealt! And you decide how to play them. It’s a challenge, but I’m not folding yet! Again, Dr G, thanks. :)
I often feel like I'm trying to figure out the 'MS biology' you speak of. I've said it before, I think it starts in the gut. Many things lead to a bad gut but we need to test for the precursors and bad gut itself. I think it could be preemptive. If most of our immune system is in the gut I don't understand why we don't do the relevant serum tests and stool tests when someone turns 18. I could prevent so much, not just MS. I got that testing after diagnosis. Leaky gut, SIBO, NAFLD, all while being fit and active.
A huge thank you for providing the natural history statistics around average time from symptom onset to requiring a walking stick. This information is exactly what I’ve been searching for to help me manage uncertainty by providing much needed context with which to interpret a diagnosis of ms. It’s helpful for me to understand the baseline of the natural disease course. I am comfortable with interpreting population-level statistics and understand that being on a highly effective DMT will hopefully improve the likelihood of having a better outcome.
Is there any similar natural history population data available on average time/percentage of pwMS likely to reach other significant EDSS milestones (e.g EDSS 7 and 9?)?
Please note the data in this paper is often presented as time since the onset of the progressive phase, so you need to look at the Kaplan-Meier curves from symptom onset to get the correct values.
I was twice misdiagnosed with strokes before they realised their mistakes. Unfortunately my cognition was significantly affected and it was a long time before I was well enough to consider complaining, but I didn't have anyone able to advocate for me. I have worked very hard to overcome the psychological damage that period did to me. It's not the only misdiagnosis I have been subject to, there has also been gaslighting and some other unpleasant experiences
that I should have reported (not ms related). It all has an effect and has led to avoidance when it comes to asking for help with my health. It has taken a long time but I don't ruminate much about it anymore, if I do think about it I just feel very sad because these things shouldn't have happened.
I’m personally struggling with uncertainty, just today went for a family walk on beach and got very tired for the first time came home and slept is this going to be my new norm ? Im doing everything I can I eat well go to the gym 3x a week no dairy or sugar (if that helps) healthy weight have started a good dmt tysabri, but my mind keeps going back to my past thinking I’ve had this for years and was misdiagnosed or fobbed off , then I start thinking I’m further along the disease course and moving on from the rr phase , was only diagnosed 4 months ago with symptoms of numbness from feet moving up to my chest over the course of 4 days , steroids helped by around 80% , edss is 1.5 4 brain lesions and one in neck , I’ve asked but now one can give me even give me a hint of how I will progress that’s what also plays on my mind alot
Neurologists are not made equal. Support around the country differs widely, but that can be said for many conditions, not just MS. We are all individuals and I understand that advice and care may vary.
Since my brother was diagnosed with MS at the age of 26, it was not a surprise when 20 years later my MRI showed lesions on my spine and brain and a diagnosis of MS followed.
I have been lucky and have not had any relapses to speak of. I am just a northern lass who never complains, and never explains. Other than motor fatigue and tingles in cold weather I get by.
How can Neurologists be sure of the advice that they are giving a patient when the MS condition is relapsing, remitting as it is in my case? Thankfully, it has all been quiet and smoldering. I have stopped asking questions from HCPs and I crack on with life.
I think there’s the time it takes for diagnosis and the time it takes for treatment to be offered. I felt my diagnosis came somewhat out of the blue, but then I was sent away with nothing but a ‘get on with your life and just live with those odd sensations’, a label and a dark cloud of uncertainty hanging over me for a decade. That was horrible. No support, no treatment. Eventually I cracked when Covid came and I panicked and banged the doors down to be seen by a neurologist. Three years later, I started on my first DMT. You advocate early treatment but it hasn’t been that way and that has caused fear and upset and depression.
Reading your questions about 'how long it took' to get diagnosed, for someone to take my symptoms seriously, etc., I again wonder if there are other PwMS out there like me, who were diagnosed before properly realising they even had 'symptoms'. I was so used to my symptoms (which I had ever since I can remember) that I was just wondering why they didn't go away like they always did and just casually mentioned this to my GP who immediately sent me to a neurologist. I told him it was probably nothing, he told me it was MS. I've always felt happy that I didn't grow up with the burden of an MS-diagnosis. The issue of early diagnosis has only become relevant relatively recently. 12 years ago, there were only a handful of DMTs, and they were not proscribed as readily as today. So I preferred blissful ignorance;)
“There is no reason why you can’t live a whole and meaningful life with MS, even in the face of uncertainty. (YES!) Please let [me] know if past events have affected your functioning and how you have overcome them so you can focus on maximising living in the present and an uncertain future.”
I think it has to start with personality. How you’ve dealt with things before, is how you’ll deal with them again, at least for starters. Did you wait to see if you were benign? Did you wait to see a doctor for 10 years? Did you look for an alternative cure? Are you still searching? Denial does not have to be dysfunctional, either. I got lucky thru the whole thing, really. In 1995 there was only one DMT “on the block”: Betaseron (50-80% fewer relapses). We all thought it was good enough to be the considered “the cure”. We met a MS neurologist at Wake Forest University who used methylprednisolone as an anti-inflammatory (not symptom relief) within 4 days of relapse onset. Seems to have worked. We could go on with our lives. I stopped having relapses. But it did apparently leave out the PPMSr’s and a guy as I recall with painful leg spasticity and spasms. I think doing a shot every other day kept MS on my mind. I didn’t forget I had it. An Ocrevus infusion twice a year really does let you forget you have MS and mimics “a cure” at first (if you don’t get an infection), if you are early. You can get on with your life, for a while, and think you’ve got it licked. But still, last I checked there is no cure for MS.
One very predictable human conduct or demeanor is to blame misfortune to “outside of one’s self”. MS seems to fit so many of those things. For example, Smoking. Since we know smoking makes bad things happen, it seems likely that other bad things will make bad things happen as well- poor nutrition, alcohol, stress, diet, EBV etc. I don’t see MS that way at all. MS is genetic bad luck, the genetic “booby prize”. There are plenty of smokers, people who don’t eat right, alcoholics, stressed out people, histories of strep throat and EBV, etc. that don’t get MS. You have to start with a “winning” combination of genes (which varies from MS person to MS person), amongst of a selection of 220 winning genes. Without those, you’ll never get MS. I read aspects in studies all the time, that seem to point to this- genes that eventually contribute to immune system dysfunction.
I note that #40 in the risk factors list is genetics, but those are not modifiable and being aware of that will or will not (?) help one manage their MS. I think the list of 40 Factors is important and I am not advocating being careless once you have MS. I am also not advocating leading a boring sheltered life to avoid MS.
My history, I could write a book about the things I overcame, mostly by luck. Sued an employer (BB&T in US) [a battle between right and wrong] who then paid for my duplex home, the profits bought dividend paying stocks, which have also increased in value (30 years worth of value). The expensive education (US guaranteed student loans) lead to a PhD and was forgiven, only because I qualified for disability because of MS. Because I worked before college since a kid and young adult restaurant manager, and thru college, I had a work track record that made me eligible for Social Security (SSDI) and Medicare. I learned about antiques and collectables and dabbled there as well. It is difficult to marry a woman, when one doesn’t have a bank account, and most women (I found) also avoid chronic illness (MS) like the plague. You are no longer an “eligible bachelor”. But with a bank account, not so much, and especially if you marry outside of the country. I married a wonderful women. Should I go on? The answer, is you have to be stubborn, persistent, hopeful, able to see the light of day, not too afraid, and accepting of bad luck which I always had. [End of story.]
When you say pre dmt era , as far as I’m aware tysabri has been used for nearly 20years and is now still considered one of the highest efficiency dmts , I wonder what percentage of patients that have managed to stay on tysabri are still fully mobile ?
That will depend on how disabled they were when they started Natalizumab. Sadly, natalizumab does not switch off smouldering MS. It seems to slow smouldering MS, but not stop it.
Life is inherently uncertain. I remember that from day 1 of my diagnosis my mind was telling me “Ah well, I could get run over by a bus tomorrow”. Very cliché, I know. My ex-husband’s response to my diagnosis was “What do we do now? The lady round the corner with MS, her husband left her” I thanked him for his support, and told him “We go home and get on with life.” Just over 4 years later, I left him and I have never looked back.
My diagnostic journey lasted about 5 years. Very poor vision in my right eye due to Optic Neuritis landed me in the emergency eye clinic on Saturday morning. Months of tests followed, all of which were inconclusive. This health MOT included an MRI of my brain which I have seen, there is literally nothing visible, just grey matter. The only conclusion was “you might have a slightly high cholesterol level” My symptoms had disappeared, so I was told to “go away, and come back if it happens again”. Three years later I returned and had another health MOT. This time the MRI showed 3 small white patches in my brain. “Hmm, they weren’t there last time”.
I suppose I could be upset that 2nd time around, radiology told my GP that “there were some changes on my brain MRI, but not indicative of a chronic condition such as MS”, and, in August, a Neurology Registrar examined me and said “she was going to check with her Consultant, but there didn’t seem to be much to say”, but medics are humans, young doctors need to learn, and the body is a complicated biological machine. The Consultant diagnosed MS on 17/12/2010, great Christmas present!
I do not believe that an earlier diagnosis would have been better or made any difference to the outcome. Over the last year I have been reclassified as Secondary Progressive MS and, following various tests to ensure my safety, am now 10 days into my first DMT: Siponimod. I feel lucky that, 14 years later, I am still walking around, I was able to complete my Maths degree at the age of 45 in 2012 and now teach Maths at sixth form college.
Not bad Ay!
Congratulations on your degree !🎊 But I’m jealous. You could leave your ex. Staying due to dependence on medical benefits is totally awful.😞
I can imagine! I stayed for years while I had low / no income as a stay at home Mum. When I left, my ex said "It all went wrong when you got diagnosed with MS". It was wrong long before that!
Oh you lovely woman! Isn’t that the truth? It just lays everything bare…💕
I cope with uncertainty by focusing on living each day as it comes, and putting myself first. I have to admit I have got more selfish! I have recently been reading Gabor Mate and he believes that psychological factors play a big role in autoimmune disorders, so I am kind to myself now before being kind to others.
I have also had breast cancer and this diagnosis is the one that was harder to deal with. I have learned to accept that I may have a shorter life than others, than the younger me expected, but it will be longer than many others too. And I'm going to make darn sure I make the most of it. And I do everything possible to keep my mind and body healthy.
Again such good advice and insight into an uncertain picture. The only thing I would add from the patients perspective is that sometimes when a diagnosis has taken a very long time despite an obvious MS presentation, the patient is greatly helped by an apology - "sorry its taken so long" " sorry you should been diagnosed earlier" or "sorry you weren't heard about your worries". This helps patients move forward, but I suspect it is discouraged by NHS managers. My MS diagnosis was within 4 weeks and no problem, including the uncertainty. My nana had MS and I have seen first hand what my future could be. My cancer diagnosis was an entirely different story, and has led to an entirely different response to the uncertainty I live with now. "Sorry" goes a long way in all aspects of life.
Yes, I agree with an apology when there is something to apologise about, i.e., a clinical or healthcare system error. But sometimes, it takes watchful waiting for MS to declare itself diagnostically, but the latter needs to be explained to the patient so they understand what is happening and a plan needs to be done to expedite future visits if the patient develops new symptoms.
I imagine that "knowing first hand what the future could be" could be very scary, depending on how your Nana was affected by MS and how she dealt with it. My Mum was "disabled", but not by MS, from her birth. I'm sorry if you don't like the term disabled but there wasn't a more PC to describe her situation when I grew up in the 1970s and I feel no need to change it. What matters is she taught me to live the life I have with dignity but with maybe a little too strong an emphasis on not asking for or accepting help. Her 4 children, were independent from a young age and were expected to "muck in" to keep the family functioning. We took it in turns to cook and shop, and enable every member of the family to achieve their desires. We were often out and about without Mum or Dad, who was at work. It's just how life was, I'm the youngest, I never knew any different.
My coping mechanism has been gratitude. Thank God I have a job where I am sat down (although that has a knock on effect). Feedback to my MS team how the process has affected me psychologically etc., Hopefully this helps to improve services. I complete every survey I can on all MS sites MS UK etc., and this will add insight. I have cried a lot too 😌
Thank you for this. It covers so much. I have no idea how long I have had the disease, but oddities came and they went for so many years. I initially had a real gaslighter neurologist whom I left due to the pure waste of time, and stuck with my, at the time, brilliant pit bull of a PCP, who believed that MS is essentially a subclinical disease. Early on, I had no uncertainty! (In the wayback machine, it was the betaseron lottery.) The MS Society showed us all riding bikes and running marathons! It looked like Oprah! I was finally definitively diagnosed with MS after perhaps 5 ? years of dithering, and I was diagnosed with an aggressive cancer within months. I wish that MS were treated as seriously as cancer!
My uncertainty with the future is now living the obvious decline and parsing out the legacy effects of whopping chemo and smouldering MS. Cerebellar involvement, brain stem, bladder, bowel, spasticity loom large in the future I have left to live. (And add a small TIA to the...cerebellum!) Meditation keeps me here, now, sane. And let’s face it: ya play the cards yer dealt! And you decide how to play them. It’s a challenge, but I’m not folding yet! Again, Dr G, thanks. :)
I often feel like I'm trying to figure out the 'MS biology' you speak of. I've said it before, I think it starts in the gut. Many things lead to a bad gut but we need to test for the precursors and bad gut itself. I think it could be preemptive. If most of our immune system is in the gut I don't understand why we don't do the relevant serum tests and stool tests when someone turns 18. I could prevent so much, not just MS. I got that testing after diagnosis. Leaky gut, SIBO, NAFLD, all while being fit and active.
I agree. I think mine started in the gut too.
A huge thank you for providing the natural history statistics around average time from symptom onset to requiring a walking stick. This information is exactly what I’ve been searching for to help me manage uncertainty by providing much needed context with which to interpret a diagnosis of ms. It’s helpful for me to understand the baseline of the natural disease course. I am comfortable with interpreting population-level statistics and understand that being on a highly effective DMT will hopefully improve the likelihood of having a better outcome.
Is there any similar natural history population data available on average time/percentage of pwMS likely to reach other significant EDSS milestones (e.g EDSS 7 and 9?)?
https://academic.oup.com/brain/article/129/3/584/390828
Please note the data in this paper is often presented as time since the onset of the progressive phase, so you need to look at the Kaplan-Meier curves from symptom onset to get the correct values.
Thank you for taking the time to share this. This information has been invaluable to me.
Yes the hopeful message is 50% are without a cane after 17 years and 15% never need one despite ageing. Yay!
I was twice misdiagnosed with strokes before they realised their mistakes. Unfortunately my cognition was significantly affected and it was a long time before I was well enough to consider complaining, but I didn't have anyone able to advocate for me. I have worked very hard to overcome the psychological damage that period did to me. It's not the only misdiagnosis I have been subject to, there has also been gaslighting and some other unpleasant experiences
that I should have reported (not ms related). It all has an effect and has led to avoidance when it comes to asking for help with my health. It has taken a long time but I don't ruminate much about it anymore, if I do think about it I just feel very sad because these things shouldn't have happened.
I’m personally struggling with uncertainty, just today went for a family walk on beach and got very tired for the first time came home and slept is this going to be my new norm ? Im doing everything I can I eat well go to the gym 3x a week no dairy or sugar (if that helps) healthy weight have started a good dmt tysabri, but my mind keeps going back to my past thinking I’ve had this for years and was misdiagnosed or fobbed off , then I start thinking I’m further along the disease course and moving on from the rr phase , was only diagnosed 4 months ago with symptoms of numbness from feet moving up to my chest over the course of 4 days , steroids helped by around 80% , edss is 1.5 4 brain lesions and one in neck , I’ve asked but now one can give me even give me a hint of how I will progress that’s what also plays on my mind alot
Neurologists are not made equal. Support around the country differs widely, but that can be said for many conditions, not just MS. We are all individuals and I understand that advice and care may vary.
Since my brother was diagnosed with MS at the age of 26, it was not a surprise when 20 years later my MRI showed lesions on my spine and brain and a diagnosis of MS followed.
I have been lucky and have not had any relapses to speak of. I am just a northern lass who never complains, and never explains. Other than motor fatigue and tingles in cold weather I get by.
How can Neurologists be sure of the advice that they are giving a patient when the MS condition is relapsing, remitting as it is in my case? Thankfully, it has all been quiet and smoldering. I have stopped asking questions from HCPs and I crack on with life.
Xx
I think there’s the time it takes for diagnosis and the time it takes for treatment to be offered. I felt my diagnosis came somewhat out of the blue, but then I was sent away with nothing but a ‘get on with your life and just live with those odd sensations’, a label and a dark cloud of uncertainty hanging over me for a decade. That was horrible. No support, no treatment. Eventually I cracked when Covid came and I panicked and banged the doors down to be seen by a neurologist. Three years later, I started on my first DMT. You advocate early treatment but it hasn’t been that way and that has caused fear and upset and depression.
If you didn't see a Neurologist, who diagnosed MS?
Reading your questions about 'how long it took' to get diagnosed, for someone to take my symptoms seriously, etc., I again wonder if there are other PwMS out there like me, who were diagnosed before properly realising they even had 'symptoms'. I was so used to my symptoms (which I had ever since I can remember) that I was just wondering why they didn't go away like they always did and just casually mentioned this to my GP who immediately sent me to a neurologist. I told him it was probably nothing, he told me it was MS. I've always felt happy that I didn't grow up with the burden of an MS-diagnosis. The issue of early diagnosis has only become relevant relatively recently. 12 years ago, there were only a handful of DMTs, and they were not proscribed as readily as today. So I preferred blissful ignorance;)
“There is no reason why you can’t live a whole and meaningful life with MS, even in the face of uncertainty. (YES!) Please let [me] know if past events have affected your functioning and how you have overcome them so you can focus on maximising living in the present and an uncertain future.”
I think it has to start with personality. How you’ve dealt with things before, is how you’ll deal with them again, at least for starters. Did you wait to see if you were benign? Did you wait to see a doctor for 10 years? Did you look for an alternative cure? Are you still searching? Denial does not have to be dysfunctional, either. I got lucky thru the whole thing, really. In 1995 there was only one DMT “on the block”: Betaseron (50-80% fewer relapses). We all thought it was good enough to be the considered “the cure”. We met a MS neurologist at Wake Forest University who used methylprednisolone as an anti-inflammatory (not symptom relief) within 4 days of relapse onset. Seems to have worked. We could go on with our lives. I stopped having relapses. But it did apparently leave out the PPMSr’s and a guy as I recall with painful leg spasticity and spasms. I think doing a shot every other day kept MS on my mind. I didn’t forget I had it. An Ocrevus infusion twice a year really does let you forget you have MS and mimics “a cure” at first (if you don’t get an infection), if you are early. You can get on with your life, for a while, and think you’ve got it licked. But still, last I checked there is no cure for MS.
One very predictable human conduct or demeanor is to blame misfortune to “outside of one’s self”. MS seems to fit so many of those things. For example, Smoking. Since we know smoking makes bad things happen, it seems likely that other bad things will make bad things happen as well- poor nutrition, alcohol, stress, diet, EBV etc. I don’t see MS that way at all. MS is genetic bad luck, the genetic “booby prize”. There are plenty of smokers, people who don’t eat right, alcoholics, stressed out people, histories of strep throat and EBV, etc. that don’t get MS. You have to start with a “winning” combination of genes (which varies from MS person to MS person), amongst of a selection of 220 winning genes. Without those, you’ll never get MS. I read aspects in studies all the time, that seem to point to this- genes that eventually contribute to immune system dysfunction.
I note that #40 in the risk factors list is genetics, but those are not modifiable and being aware of that will or will not (?) help one manage their MS. I think the list of 40 Factors is important and I am not advocating being careless once you have MS. I am also not advocating leading a boring sheltered life to avoid MS.
My history, I could write a book about the things I overcame, mostly by luck. Sued an employer (BB&T in US) [a battle between right and wrong] who then paid for my duplex home, the profits bought dividend paying stocks, which have also increased in value (30 years worth of value). The expensive education (US guaranteed student loans) lead to a PhD and was forgiven, only because I qualified for disability because of MS. Because I worked before college since a kid and young adult restaurant manager, and thru college, I had a work track record that made me eligible for Social Security (SSDI) and Medicare. I learned about antiques and collectables and dabbled there as well. It is difficult to marry a woman, when one doesn’t have a bank account, and most women (I found) also avoid chronic illness (MS) like the plague. You are no longer an “eligible bachelor”. But with a bank account, not so much, and especially if you marry outside of the country. I married a wonderful women. Should I go on? The answer, is you have to be stubborn, persistent, hopeful, able to see the light of day, not too afraid, and accepting of bad luck which I always had. [End of story.]
When you say pre dmt era , as far as I’m aware tysabri has been used for nearly 20years and is now still considered one of the highest efficiency dmts , I wonder what percentage of patients that have managed to stay on tysabri are still fully mobile ?
That will depend on how disabled they were when they started Natalizumab. Sadly, natalizumab does not switch off smouldering MS. It seems to slow smouldering MS, but not stop it.
To deal with uncertainty of MS I am doing either AHSCT or CAR-T Cell as soon as possible. Then top up with neuroprotective / remyelination compounds