Exploring possibilities:
Apart from the conventional, injectable and oral disease modifying drugs for relapsing MS, it appears that little can be done for the condition that is certain to have any effect. There are no disease modifying drugs for progressive MS, and there is no cure.
There are few celebrated cases of recovery from progressive multiple sclerosis, and where there are, their successes have not been reliably replicated. The story of Roger MacDougall can be found here. The story of Dr Terry Wahls can be found here. Mr MacDougall recovered using diet and supplements. Dr Wahls recovered using diet and functional electrical stimulation. This appears to be the scientific journal entry relating to Dr Wahls' recovery, and can be found here http://www.casesjournal.com/content/2/1/7601
If so few cases of documented recovery from advanced MS exist, what options and possibilities can be explored?
First of all, overall approaches that have not been tried before. The predominant contemporary medical model with MS appears to involve a preliminary assessment from a doctor, followed by a referral to a neurologist. The neurologist will then usually test the patient, but generally only with a view to diagnosis, eliminating alternatives and backing clinical assessment with laboratory tests. Once a diagnosis is made, the experience may be that the individual is then treated as belonging to a homogeneous mass of patients with the disease label of MS, albeit a disease label with no known cause or cure. There is usually no attempt made to investigate, contemplate or understand the disease process that is occurring in that particular patient.
In contemporary MS disease management, there seems to be an assumption that there is only one causative agent at work instead of many possible causes with similar outcomes in different individuals, or one causative agent instead of a complex interplay of factors all reducing quality of life in the same individual. The theory most prevalent seems to be the 'autoimmune' theory of MS, which holds that immune cells attack the myelin when they shouldn't be doing so, and if we could just hamper those cells from doing that, then everything might be fine, unless the person starts to progress anyway, in which case all bets are off.
In a separate ‘universe’, researchers and pharmaceutical companies are working on research and the development of therapies. This may involve petri dishes, mice, or sometimes other people with MS, but generally not the actual person who is presenting to their doctor. Doctors then choose with the patient from a limited range of disease-modifying and symptom-management therapies (usually a powerful drug or drugs) that do not necessarily intimately relate to what is going on in their particular body, and then monitor what happens. These are not curative or restorative, may not make the person feel better, and may actually make them feel worse than they were before, or expose them to serious and even life threatening consequences that they would likely not have been exposed to, were it not for the therapy.
In the case of progressive MS, there are no disease modifying therapies, and a limited range of symptom management therapies, which are not curative, and often not restorative, many bringing with them serious and novel side effects which some patients consider to be worse than the disease.
These people with progressive disease are most in need of a multidisciplinary team to collaborate with the patient and each other to maximise health outcomes and prevent negative outcomes which are part of the disease itself, such as deconditioning and wheelchair use. This coordinated, team-based, whole of life model does not appear to exist in Australia.
They may well also be in need of a different medical approach, one which does not rely on esoteric research in petri dishes, or mice, or even other people with MS in another part of the world, but one which focuses on the individual, seeks to identify all sources of dysfunction, and to correct them, with a view to maximising health in all dimensions.
In the absence of such a model, a person with MS may wish to do as much as they can for themselves, and the following areas of information are just some of those which may have some impact on disease progress.
There is a bewildering array of research and commentary on MS, with a bewildering array of information sources, and how can the average person with MS ever begin to make sense of it all? Even large sites founded by big research and support organisations do not seem to take in the grand sweep of historical and contemporary MS research and distil it down in simple language for the benefit of patients and practitioners alike. What has all that research produced? What is known? What is unknown? What are the practical results for PWMS right now?
In the case of progressive MS, where there are no stabilising or restorative treatments, then provided it does no harm, the individual (or an alliance of individuals), are free to explore any option which maximises their health.
VITAMIN B12 DEFICIENCY:
Apart from the conventional, injectable and oral disease modifying drugs for relapsing MS, it appears that little can be done for the condition that is certain to have any effect. There are no disease modifying drugs for progressive MS, and there is no cure.
There are few celebrated cases of recovery from progressive multiple sclerosis, and where there are, their successes have not been reliably replicated. The story of Roger MacDougall can be found here. The story of Dr Terry Wahls can be found here. Mr MacDougall recovered using diet and supplements. Dr Wahls recovered using diet and functional electrical stimulation. This appears to be the scientific journal entry relating to Dr Wahls' recovery, and can be found here http://www.casesjournal.com/content/2/1/7601
If so few cases of documented recovery from advanced MS exist, what options and possibilities can be explored?
First of all, overall approaches that have not been tried before. The predominant contemporary medical model with MS appears to involve a preliminary assessment from a doctor, followed by a referral to a neurologist. The neurologist will then usually test the patient, but generally only with a view to diagnosis, eliminating alternatives and backing clinical assessment with laboratory tests. Once a diagnosis is made, the experience may be that the individual is then treated as belonging to a homogeneous mass of patients with the disease label of MS, albeit a disease label with no known cause or cure. There is usually no attempt made to investigate, contemplate or understand the disease process that is occurring in that particular patient.
In contemporary MS disease management, there seems to be an assumption that there is only one causative agent at work instead of many possible causes with similar outcomes in different individuals, or one causative agent instead of a complex interplay of factors all reducing quality of life in the same individual. The theory most prevalent seems to be the 'autoimmune' theory of MS, which holds that immune cells attack the myelin when they shouldn't be doing so, and if we could just hamper those cells from doing that, then everything might be fine, unless the person starts to progress anyway, in which case all bets are off.
In a separate ‘universe’, researchers and pharmaceutical companies are working on research and the development of therapies. This may involve petri dishes, mice, or sometimes other people with MS, but generally not the actual person who is presenting to their doctor. Doctors then choose with the patient from a limited range of disease-modifying and symptom-management therapies (usually a powerful drug or drugs) that do not necessarily intimately relate to what is going on in their particular body, and then monitor what happens. These are not curative or restorative, may not make the person feel better, and may actually make them feel worse than they were before, or expose them to serious and even life threatening consequences that they would likely not have been exposed to, were it not for the therapy.
In the case of progressive MS, there are no disease modifying therapies, and a limited range of symptom management therapies, which are not curative, and often not restorative, many bringing with them serious and novel side effects which some patients consider to be worse than the disease.
These people with progressive disease are most in need of a multidisciplinary team to collaborate with the patient and each other to maximise health outcomes and prevent negative outcomes which are part of the disease itself, such as deconditioning and wheelchair use. This coordinated, team-based, whole of life model does not appear to exist in Australia.
They may well also be in need of a different medical approach, one which does not rely on esoteric research in petri dishes, or mice, or even other people with MS in another part of the world, but one which focuses on the individual, seeks to identify all sources of dysfunction, and to correct them, with a view to maximising health in all dimensions.
In the absence of such a model, a person with MS may wish to do as much as they can for themselves, and the following areas of information are just some of those which may have some impact on disease progress.
There is a bewildering array of research and commentary on MS, with a bewildering array of information sources, and how can the average person with MS ever begin to make sense of it all? Even large sites founded by big research and support organisations do not seem to take in the grand sweep of historical and contemporary MS research and distil it down in simple language for the benefit of patients and practitioners alike. What has all that research produced? What is known? What is unknown? What are the practical results for PWMS right now?
In the case of progressive MS, where there are no stabilising or restorative treatments, then provided it does no harm, the individual (or an alliance of individuals), are free to explore any option which maximises their health.
VITAMIN B12 DEFICIENCY: