Having some idea of how bad your MS is, or not, will allow you to discuss with your neurologist issues around what level of treatment is appropriate for you.
I appreciate your comments focusing on the hope for benign MS, that many newbies have, and your attempt to largely dispel that. I’ve “made it” all the way through from 28 to 64 but have some manageable deficits. I’ll die from something, but hopefully not too soon. I’ve seen or read about lots of others, not so “lucky”. MS totally changed my life, however, and I think that is the initial road block faced. Most think MS should be an illness that is curable and doesn’t involve sacrifice, inconvenience or any significant change of plans. Initially, one accepts no change. Then, a little- they can deal with it. Then a little more if they have to,.. on and on. In hind sight, one can look back and by then, they have been forced to accept the changes one way or another. Not putting up such a strong road block to change, initially, might lead to increased positive outcomes later? Perhaps an early invitation to consider alternative creative ways to have a happy life (just in case)? For many however, that would probably include a marked change in aspects of one’s philosophy of life. In my former profession, I think we used the term denial to describe not facing reality. The excuses are many and it runs from MS to Anti-vaxxers to Climate Science; to electing Presidents. I just thought it was noteworthy your sincere attempt to add some tough truth to your discussion.
I wish I had this information when I was Dx in 2002. Actually I asked many of these questions many times of my neurologists and doctors in the beginning and received confusing, or no, answers. At the time of Dx I was pretty sure that it was MS from my own research, and that it had started some years before. If I had known about the cognitive/emotional problems it causes, I would say that it probably started in my early twenties. But at that time there would have been little chance of anyone catching it, let alone treating it with more than observation and eventually Betaseron. If I had known about CIS episodes, I would say it probably started when I was about twelve or thirteen. But at that time it definitely would have been an oddity not given a second thought, and it would have been silent for many more years anyway. Now as it stands it seems my score on the Kurtzke Scale is 7.5… which I think is actually a little low since I can no longer stand nor walk any longer, since four years ago, and I’ve been triplegic for the past three years with my non-dominant arm/hand slipping away quickly. I thought I was following the medical advice well, but upon reflection there have been many mistakes and bad episodes of neuroinflammation not addressed quickly, or just bad relapses from infections period, in the past nineteen years. I can actually think back and give a good estimate (within a few months) of when my reserve ran out—honestly. I am good at observation because I constantly do it naturally, and I could actually feel the neurological reserve kicking in when my body needed it, and when it petered out. Not really fun to experience.
Thanks Prof G for the great content, the 19 prognosis factors is equally weighted by the points system. Would it be possible to rank them? Also for someone whos been put on DMT's since onset, 6 would have been modified so would it mean the samething with or without a DMT?
These are just a list of factors that we use to prognosticate at baseline. Yes, once on a DMT some of these will be altered/modified and hence can't be used. Another prognostic score needs to be used in patients already on a DMT.
Thank you for this. Reading the comments and reflecting on my own situation just shows how many questions we all have and unfortunately how difficult it is to actually get to speak to a specialist. I find this very challenging.
On some level I feel this question is academic, because the answer shouldn't affect treatment decisions. Even the "mildest" form of MS is a really bad disease that should be treated as aggressively as possible (will anyone really argue that there is an acceptable level of brain and spinal cord damage for a patient to sustain?).
This is very helpful information, some questions to ask my neurologist next visit, (#4, 9, 10.) Diagnosed in 1977 after having vision problems, and many tests to rule out other ailments, I’m in that small percentage of pwms who go decades with no relapses (35 years for me). Now on DMT. No visible symptoms but sensory ataxia, bladder problems, strange sensations to drive me crazy. My neurologist never wants to discuss the future.
Surprised at 14 -thought that was part of proper differential diagnosis criteria (although apparently some neuros forego LP for diagnosis... I sure wish I had been spared that ordeal).
This has made me so sad. My 15 year old son had 8 of these factors just at diagnosis. None modifiable as prognostic indicators. And yet no children are offered any IRTs so do they just wait it out? Luckily our fantastic paeds neurologist supports decent DMT use but would anyone support IRT in the paediatric population with poor dictators at the start?
Really? Haven’t heard of this but maybe other centres do. Paeds MS has so little info out there. I guess they need to show failure on other DMDs first? Ticking time bomb.
Hi MumP, we have a Facebook Lemtrada support group and there are families who are supporting children through Lemtrada treatment in our group, maybe you can join and gather advice from others in your situation? It’s a really lovely supportive group xx
Re "We are simply trying to move you to the right into a more favourable prognostic group"
How can you do?
Many of the prognostic factors in your list are non- modifiable
For example- age at diagnosis, gender, number of early attacks, recovery from early attacks, systems affected in early attacks, number of pre-existing lesions, ...
We are not necessarily trying to modify these factors; they are simply predictive of a poor outcome. What we are trying to modify is the outcome in 20, 30, 40 or 50 years time. This is what actuaries do with critical illness and life insurance.
Thanks for this Prof. Its helpful to have these general guides but what is difficult to capture is the weight that can be assigned to each criteria. For instance, i am male and have 3 spinal lesions. Otherwise, i dont really tick any of the above boxes, yet my prognosis based on these two factors alone would be poor from the other literature / articles that i have read
thank you for this information - this is really the kind of information you need to make informed decisions about treatment.
I took the EDSS-test and I was shocked to get a 3!
I have never been asked these kind of questions before, just the walking on the toes, and got a 0 because I can walk on my toes like a pro...
I appreciate your comments focusing on the hope for benign MS, that many newbies have, and your attempt to largely dispel that. I’ve “made it” all the way through from 28 to 64 but have some manageable deficits. I’ll die from something, but hopefully not too soon. I’ve seen or read about lots of others, not so “lucky”. MS totally changed my life, however, and I think that is the initial road block faced. Most think MS should be an illness that is curable and doesn’t involve sacrifice, inconvenience or any significant change of plans. Initially, one accepts no change. Then, a little- they can deal with it. Then a little more if they have to,.. on and on. In hind sight, one can look back and by then, they have been forced to accept the changes one way or another. Not putting up such a strong road block to change, initially, might lead to increased positive outcomes later? Perhaps an early invitation to consider alternative creative ways to have a happy life (just in case)? For many however, that would probably include a marked change in aspects of one’s philosophy of life. In my former profession, I think we used the term denial to describe not facing reality. The excuses are many and it runs from MS to Anti-vaxxers to Climate Science; to electing Presidents. I just thought it was noteworthy your sincere attempt to add some tough truth to your discussion.
I wish I had this information when I was Dx in 2002. Actually I asked many of these questions many times of my neurologists and doctors in the beginning and received confusing, or no, answers. At the time of Dx I was pretty sure that it was MS from my own research, and that it had started some years before. If I had known about the cognitive/emotional problems it causes, I would say that it probably started in my early twenties. But at that time there would have been little chance of anyone catching it, let alone treating it with more than observation and eventually Betaseron. If I had known about CIS episodes, I would say it probably started when I was about twelve or thirteen. But at that time it definitely would have been an oddity not given a second thought, and it would have been silent for many more years anyway. Now as it stands it seems my score on the Kurtzke Scale is 7.5… which I think is actually a little low since I can no longer stand nor walk any longer, since four years ago, and I’ve been triplegic for the past three years with my non-dominant arm/hand slipping away quickly. I thought I was following the medical advice well, but upon reflection there have been many mistakes and bad episodes of neuroinflammation not addressed quickly, or just bad relapses from infections period, in the past nineteen years. I can actually think back and give a good estimate (within a few months) of when my reserve ran out—honestly. I am good at observation because I constantly do it naturally, and I could actually feel the neurological reserve kicking in when my body needed it, and when it petered out. Not really fun to experience.
Thanks Prof G for the great content, the 19 prognosis factors is equally weighted by the points system. Would it be possible to rank them? Also for someone whos been put on DMT's since onset, 6 would have been modified so would it mean the samething with or without a DMT?
These are just a list of factors that we use to prognosticate at baseline. Yes, once on a DMT some of these will be altered/modified and hence can't be used. Another prognostic score needs to be used in patients already on a DMT.
wow i fit almost every box for bad prognosis except 3 lucky for me im about to do hsct hopefully it makes my prognosis a bit better
Thank you for this. Reading the comments and reflecting on my own situation just shows how many questions we all have and unfortunately how difficult it is to actually get to speak to a specialist. I find this very challenging.
On some level I feel this question is academic, because the answer shouldn't affect treatment decisions. Even the "mildest" form of MS is a really bad disease that should be treated as aggressively as possible (will anyone really argue that there is an acceptable level of brain and spinal cord damage for a patient to sustain?).
This is very helpful information, some questions to ask my neurologist next visit, (#4, 9, 10.) Diagnosed in 1977 after having vision problems, and many tests to rule out other ailments, I’m in that small percentage of pwms who go decades with no relapses (35 years for me). Now on DMT. No visible symptoms but sensory ataxia, bladder problems, strange sensations to drive me crazy. My neurologist never wants to discuss the future.
Surprised at 14 -thought that was part of proper differential diagnosis criteria (although apparently some neuros forego LP for diagnosis... I sure wish I had been spared that ordeal).
This has made me so sad. My 15 year old son had 8 of these factors just at diagnosis. None modifiable as prognostic indicators. And yet no children are offered any IRTs so do they just wait it out? Luckily our fantastic paeds neurologist supports decent DMT use but would anyone support IRT in the paediatric population with poor dictators at the start?
Yes, I thought cladribine and alemtuzumab are being offered to children with MS. I can't see why not.
Really? Haven’t heard of this but maybe other centres do. Paeds MS has so little info out there. I guess they need to show failure on other DMDs first? Ticking time bomb.
Hi MumP, we have a Facebook Lemtrada support group and there are families who are supporting children through Lemtrada treatment in our group, maybe you can join and gather advice from others in your situation? It’s a really lovely supportive group xx
Re "We are simply trying to move you to the right into a more favourable prognostic group"
How can you do?
Many of the prognostic factors in your list are non- modifiable
For example- age at diagnosis, gender, number of early attacks, recovery from early attacks, systems affected in early attacks, number of pre-existing lesions, ...
We are not necessarily trying to modify these factors; they are simply predictive of a poor outcome. What we are trying to modify is the outcome in 20, 30, 40 or 50 years time. This is what actuaries do with critical illness and life insurance.
Thanks for this Prof. Its helpful to have these general guides but what is difficult to capture is the weight that can be assigned to each criteria. For instance, i am male and have 3 spinal lesions. Otherwise, i dont really tick any of the above boxes, yet my prognosis based on these two factors alone would be poor from the other literature / articles that i have read
FYI none of these lesions have affected my mobility yet. All my symptoms have seen sensory, not sure whether this is a factor
Yes, so many people have been let down and are still being let down.