Progressive Multiple Sclerosis
There are essentially two types of multiple sclerosis, the type that can get better on its own, and the type that doesn’t. This site is dedicated to people with the type of MS that won’t get better on its own; primary progressive MS (PPMS) and secondary progressive MS (SPMS).
Figures vary slightly depending on the source, but up to 20% of people with MS (PWMS) will have a benign course. Around 10 percent will have PPMS and of the remaining 70%, the majority of those people (around 80%) will develop secondary progressive MS (SPMS). So out of 100 people with MS, some 66 of those will develop a progressive form of the disease.
However, at any one time, it is estimated that only 35% of people with MS will be living with progression, so ‘progressives’ are a majority that continually presents like a minority. Being as charitable as possible, perhaps that is why the seriousness and urgency of the situation for progressives is being (relatively speaking) overlooked.
Most of the attention is focused on the sort of MS that can get better by itself, which can leave people with progressive forms of the illness feeling abandoned. When support is offered, it often relates to accommodating disability, not maximising health and independence.
At the time of writing, all of the so – called disease modifying drugs (DMD’s) have been developed purely for the type of MS that can get better by itself - Relapsing Remitting MS (RRMS). If a person starts off with a form of MS that doesn’t get better by itself, or transitions from RRMS to a type of MS that no longer gets better by itself, the DMD’s are either not for them, or no longer for them.
Figures vary slightly depending on the source, but up to 20% of people with MS (PWMS) will have a benign course. Around 10 percent will have PPMS and of the remaining 70%, the majority of those people (around 80%) will develop secondary progressive MS (SPMS). So out of 100 people with MS, some 66 of those will develop a progressive form of the disease.
However, at any one time, it is estimated that only 35% of people with MS will be living with progression, so ‘progressives’ are a majority that continually presents like a minority. Being as charitable as possible, perhaps that is why the seriousness and urgency of the situation for progressives is being (relatively speaking) overlooked.
Most of the attention is focused on the sort of MS that can get better by itself, which can leave people with progressive forms of the illness feeling abandoned. When support is offered, it often relates to accommodating disability, not maximising health and independence.
At the time of writing, all of the so – called disease modifying drugs (DMD’s) have been developed purely for the type of MS that can get better by itself - Relapsing Remitting MS (RRMS). If a person starts off with a form of MS that doesn’t get better by itself, or transitions from RRMS to a type of MS that no longer gets better by itself, the DMD’s are either not for them, or no longer for them.
Why progressive MS could be the key to, well, progress…
- A person treated for RRMS is unlikely to ever know whether their disease course would have been worse, better or unchanged by taking the drugs they were prescribed.
- As things stand at the present, there are more people living with MS who will not benefit from a DMD, than those who will.
- Regardless of ‘treatment’, most people who get MS will develop a progressive form of the disease, so understanding progression and paying the most attention to that form of the disease is likely to be the key to understanding multiple sclerosis and alleviating the maximum amount of distress.
- The distinct attacks of RRMS typified by lesion formation (although they appear causal for acute neurological disability) may themselves essentially be symptomatic. The underlying disease process that drives progression is likely to be causal. Therefore, if you stop progression, you are likely to stop relapsing and remitting forms of the disease, but not necessarily the other way around.
- Even during periods of remission between relapse, it appears that damage is occurring in the Central Nervous System (CNS). It is in everyone's interest to understand the disease process that drives progression.
- Put more directly, as long as the focus is on symptoms, not causes, no lasting benefit will result.
- Progression imposes huge personal and financial costs on individuals, families and the wider society and economy. Spending relatively small sums on maximising health and independence up front, can preserve quality of life and save much larger sums later.
- More women than men get MS in a ratio of around 3:1, but roughly equal numbers of men and women get progressive MS. MS in men is relatively rare, so these individuals present perhaps the greatest opportunity to understand the disease.
The opportunity of progressive MS
There is no doubt that RRMS can cause immense suffering. However the natural history of the disease is confounding, because by definition, even if the person is left without treatment, they will naturally get better by themselves to some degree.
However, with progressive MS, layer upon layer of complications, indignities and suffering can be piled upon the affected person, creating intense and unrelenting daily misery, and by definition, this will get worse as time goes by. There can be no denying it, glossing over it, or minimising it. Advanced multiple sclerosis is a truly horrifying disease, and is a stark reminder that our current medical models are failing us.
The immensity of the challenges faced by those with progressive MS can only truly be understood by those who are in its grip. Unfortunately, their voices seem to be missing from the decision making processes that are most important to them.
But potentially, herein lies the opportunity. Essentially abandoned to our own devices by modern medicine, there is an opportunity to step beyond the model that has failed us, and explore promising anecdotes, keep an open mind, spend sufficient time on what is needful, and embrace the practice of patient – friendly, observational, individualised, holistic, and whole of life medicine with a view to maximising health and quality of life in all its dimensions.
If the best medical professionals that you have access to don’t know what causes your illness, can’t treat it, and may not even be able to manage your symptoms without creating new and potentially worse problems for you, then provided it does no harm, the individual (or an alliance of individuals), are free to try anything that may help, collaborate with others in similar situations, and attempt to develop a new medical model that is focussed on being responsive to what the people who actually have the disease really want and need.
For conservative medicine, there needs to be a profound shift in the approach to this disease, to appreciate that whatever is happening is happening now, in real time, in the bodies of people with progressive MS, not elsewhere. Understanding the process that is unfolding in those bodies will give the biggest return for each research dollar, and likely bring the most comfort and practical assistance to those affected. We have had nearly a hundred and fifty years of failed MS research and disease management that has been driven by ‘experts’ and 'professionals' who do not have the disease. Changing that model and trying something different by consulting the people most affected would therefore appear to be our best hope for a cure.
So this site is for everyone with MS, but it is dedicated to those with progressive forms of the disease, because in my experience there are so few places on the web that speak directly to that experience, or give it the attention it deserves.
However, with progressive MS, layer upon layer of complications, indignities and suffering can be piled upon the affected person, creating intense and unrelenting daily misery, and by definition, this will get worse as time goes by. There can be no denying it, glossing over it, or minimising it. Advanced multiple sclerosis is a truly horrifying disease, and is a stark reminder that our current medical models are failing us.
The immensity of the challenges faced by those with progressive MS can only truly be understood by those who are in its grip. Unfortunately, their voices seem to be missing from the decision making processes that are most important to them.
But potentially, herein lies the opportunity. Essentially abandoned to our own devices by modern medicine, there is an opportunity to step beyond the model that has failed us, and explore promising anecdotes, keep an open mind, spend sufficient time on what is needful, and embrace the practice of patient – friendly, observational, individualised, holistic, and whole of life medicine with a view to maximising health and quality of life in all its dimensions.
If the best medical professionals that you have access to don’t know what causes your illness, can’t treat it, and may not even be able to manage your symptoms without creating new and potentially worse problems for you, then provided it does no harm, the individual (or an alliance of individuals), are free to try anything that may help, collaborate with others in similar situations, and attempt to develop a new medical model that is focussed on being responsive to what the people who actually have the disease really want and need.
For conservative medicine, there needs to be a profound shift in the approach to this disease, to appreciate that whatever is happening is happening now, in real time, in the bodies of people with progressive MS, not elsewhere. Understanding the process that is unfolding in those bodies will give the biggest return for each research dollar, and likely bring the most comfort and practical assistance to those affected. We have had nearly a hundred and fifty years of failed MS research and disease management that has been driven by ‘experts’ and 'professionals' who do not have the disease. Changing that model and trying something different by consulting the people most affected would therefore appear to be our best hope for a cure.
So this site is for everyone with MS, but it is dedicated to those with progressive forms of the disease, because in my experience there are so few places on the web that speak directly to that experience, or give it the attention it deserves.