What might be missing - Pre diagnosis
Standardised differential diagnosis report:
A diagnosis of MS is almost a non-diagnosis. The term MS is just a name for a lot of unpleasant symptoms without a cause or cure. Other than the limiting and restricting effect on mainstream treatment options, the name doesn't matter particularly, but where a serious, chronically disabling neurological disease is concerned, where one form of the disease has access to those limited treatment options but the other form does not, and there is no cure in either case, then the thought uppermost in many patients' consideration is to ensure that they are fully informed on how the diagnosis was reached.
From a patient's perspective, knowing all of the different differential diagnoses that were considered and discarded in their case, (and why), would be a very empowering piece of knowledge to possess, and will put their mind at rest as they move forward under the diagnosis of MS.
This article notes the large number of MS misdiagnoses in the US, and makes a connection with this phenomenon and the reliance on MRI in the diagnostic process, and a 'therapeutic frenzy' related to the availability of powerful MS drugs in recent years http://www.oregonlive.com/health/index.ssf/2012/05/insight_into_why_hundreds_of_p.html
This American Journal of Neurology article notes the frequent misdiagnosis of MS http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369504/
This PubMed article notes that MS is misdiagnosed 5-10% of the time http://www.ncbi.nlm.nih.gov/pubmed/11794488
This MedMerits article alphabetically lists a large number of potential differential diagnoses for MS
http://www.medmerits.com/index.php/article/multiple_sclerosis/P8
The first thing that could be done for patients in the pre diagnostic phase is for the consulting neurologist to assure the patient they are working through alternative diagnoses and that they will ultimately provide the patient with a standardised list of differential diagnoses, and note next to each one, when they were eliminated and why.
This list could be provided as a standard, world's best practice guide by MS professionals, MS associations, and vetted by MS patient groups to ensure a highly reproducible quality of care, regardless of location. Time critical, easily treatable and medically acquired illnesses could top that list, in order of priority for patient outcomes. The list could be presented and discussed with the patient when the diagnosis is reached.
This would be tremendously reassuring to patients, and would eliminate worries and questions that people with MS often have after their diagnosis, since many report being uninformed during the diagnostic period, and worrying about other possible MS mimics and whether those illnesses even crossed their specialist's mind.
Urgency in diagnostic methods:
The faster a diagnosis is made, the faster treatment and health optimisation strategies can commence. Studies are showing that the earlier treatment can start, the better the outcome tends to be. Anecdotally however, some patients report a diagnostic process that is slow, with many confusing diagnostic side trips (given the final diagnosis) and seemingly random and widely spaced tests, the results of which may not even be discussed or shown to them.
Perhaps MS professionals, MS associations, and MS patient groups could collaborate on a world's best practice diagnostic protocol to ensure a highly reproducible diagnostic process in the shortest possible time frame, regardless of location.
Optimising health in all dimensions before diagnosis:
Preparing the patient for a life altering diagnosis is a dimension of health care that seems to be almost non-existent. Perhaps MS professionals, MS associations, and MS patient groups could collaborate on a world's best practice diagnostic protocol to ensure that patients are supported through this period or at least given some methods to support themselves.
Emotional resilience: The first step may well be to offer help to stabilise a patient’s mental equilibrium and give them tools to deal with pre diagnostic limbo land. Stress is correlated with disease onset and exacerbation in MS.
If a patient is under some acute or chronic stress that precipitated their disease, they now have a series of new stressors to add to whatever they are already experiencing; neurological symptoms, an uncertain diagnosis, and an uncertain future.
Dealing with pre-existing stressors is important, and so is dealing with the stress of waiting for a diagnosis.
How this should be managed is something that MS patients themselves should be telling us.
Physical health: Once stress management strategies are in place, preparing the patient to optimise health outcomes is important too. Obviously if a previously healthy individual is experiencing sudden neurological symptoms, then something is terribly wrong inside their body.
The Australian medical model does not yet seem mature enough to launch an individual investigation into what is happening inside the person with MS (or suspected MS), other than for diagnostic purposes. Unfortunately, diagnosis often means a label and potentially either the offer of one of the few drug therapies approved for RRMS, or nothing.
Exercise: Unless a person is able to exercise, they will experience a cascade of dependency, so exercise is key, both before and after diagnosis, and if it was never formally part of a person’s life, then it probably should be now. Yet people with MS often complain of exercise intolerance. At the very least, the majority complain of fatigue, which most people with MS list as their worst symptom. Apart from anything else, people with disabling neurological symptoms should be warned of the dangers of deconditioning and of bed rest in particular. For a range of reasons, people with MS will need support with an exercise program, and this could be a standard part of the counselling and referral process in the pre-diagnostic period.
Diet: Apart from the theories which suggest that diet can be used in managing MS, poor diet is correlated with a range of negative health outcomes and so called ‘lifestyle’ diseases. Instead of just looking at food and drink inputs however, the notion of dietary support in MS could be widened to include complete analysis of gastrointestinal health. For instance, poor digestive health can produce a vitamin B12 deficiency that can precisely mimic MS, but there are a range of gastrointestinal problems that can negatively impact on overall health in general, and metabolic health specifically.
These health checks, plus dietary education, can at least be offered to the person with suspected MS, so that their individual nutritional health needs are maximised during the diagnostic period. This diagnostic period can be a long one, and in MS seems almost uniquely dependent on waiting for worsening disease entrenchment, in order to make the diagnosis.
As mentioned earlier, people with MS can experience worsening of disease outcomes with the more exercise they attempt. Optimising gastrointestinal health and nutrition may well be the key to rebuilding and maintaining their capacity to exercise. Individually optimised nutritional support should be presented in such a way as to be something that can be committed to as a lifelong practice.
Co-morbidities: As mentioned earlier, the pre-diagnostic period can be long. Whilst eliminating MS mimics and accumulating evidence in support of suspected MS, or waiting for a second attack for confirmation, co-morbidities can be examined. These can be illness states that run in parallel to MS, contributing to the overall MS burden, or they can be illness states that are frequently seen with MS, or partly due to MS, like sleep apnoea. In addition, there are many things which are thought to predispose people to MS. Things like infections, smoking habits, vitamin D status (and others) can all be examined. All of the systems of the body that could be impacting on the CNS in any way, should be examined. Just because someone has MS, doesn’t mean they can’t or won’t have other illnesses, habits and deficiencies that can negatively impact on the disease process. Actively looking for other disease processes and proactively treating them, can have profound benefits for the person with MS.
Conclusion:
People who are suspected of having MS in the pre diagnostic period can be regarded as a precious resource to themselves, others with MS, and the advancement of medical knowledge in general. They were previously healthy, and now there is an active disease process that is just beginning to show itself. Instead of looking at this as a diagnostic challenge that will result in a diagnostic label and a drug prescription, neurologists and allied health professionals can look at each person with suspected MS as an opportunity to advance our knowledge, and to provide the best possible holistic model of care available to the individual patient, and to everyone else with MS.
For each person with a biochemical reaction that is going wrong, a thorough medical examination of all states of dis-ease, plus the offer of nutritional support, exercise support, and stress management can make the pre-diagnostic period a time of great optimism and promise. In MS, time is of the essence, and there could be no better time to begin optimising health in all dimensions, than in the pre-diagnostic phase.
What might be missing - Diagnosis
Standardised differential diagnosis report:
A diagnosis of MS is almost a non-diagnosis. The term MS is just a name for a lot of unpleasant symptoms without a cause or cure. Other than the limiting and restricting effect on mainstream treatment options, the name doesn't matter particularly, but where a serious, chronically disabling neurological disease is concerned, where one form of the disease has access to those limited treatment options but the other form does not, and there is no cure in either case, then the thought uppermost in many patients' consideration is to ensure that they are fully informed on how the diagnosis was reached.
From a patient's perspective, knowing all of the different differential diagnoses that were considered and discarded in their case, (and why), would be a very empowering piece of knowledge to possess, and will put their mind at rest as they move forward under the diagnosis of MS.
This article notes the large number of MS misdiagnoses in the US, and makes a connection with this phenomenon and the reliance on MRI in the diagnostic process, and a 'therapeutic frenzy' related to the availability of powerful MS drugs in recent years http://www.oregonlive.com/health/index.ssf/2012/05/insight_into_why_hundreds_of_p.html
This American Journal of Neurology article notes the frequent misdiagnosis of MS http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369504/
This PubMed article notes that MS is misdiagnosed 5-10% of the time http://www.ncbi.nlm.nih.gov/pubmed/11794488
This MedMerits article alphabetically lists a large number of potential differential diagnoses for MS
http://www.medmerits.com/index.php/article/multiple_sclerosis/P8
The first thing that could be done for patients in the pre diagnostic phase is for the consulting neurologist to assure the patient they are working through alternative diagnoses and that they will ultimately provide the patient with a standardised list of differential diagnoses, and note next to each one, when they were eliminated and why.
This list could be provided as a standard, world's best practice guide by MS professionals, MS associations, and vetted by MS patient groups to ensure a highly reproducible quality of care, regardless of location. Time critical, easily treatable and medically acquired illnesses could top that list, in order of priority for patient outcomes. The list could be presented and discussed with the patient when the diagnosis is reached.
This would be tremendously reassuring to patients, and would eliminate worries and questions that people with MS often have after their diagnosis, since many report being uninformed during the diagnostic period, and worrying about other possible MS mimics and whether those illnesses even crossed their specialist's mind.
Urgency in diagnostic methods:
The faster a diagnosis is made, the faster treatment and health optimisation strategies can commence. Studies are showing that the earlier treatment can start, the better the outcome tends to be. Anecdotally however, some patients report a diagnostic process that is slow, with many confusing diagnostic side trips (given the final diagnosis) and seemingly random and widely spaced tests, the results of which may not even be discussed or shown to them.
Perhaps MS professionals, MS associations, and MS patient groups could collaborate on a world's best practice diagnostic protocol to ensure a highly reproducible diagnostic process in the shortest possible time frame, regardless of location.
Optimising health in all dimensions before diagnosis:
Preparing the patient for a life altering diagnosis is a dimension of health care that seems to be almost non-existent. Perhaps MS professionals, MS associations, and MS patient groups could collaborate on a world's best practice diagnostic protocol to ensure that patients are supported through this period or at least given some methods to support themselves.
Emotional resilience: The first step may well be to offer help to stabilise a patient’s mental equilibrium and give them tools to deal with pre diagnostic limbo land. Stress is correlated with disease onset and exacerbation in MS.
If a patient is under some acute or chronic stress that precipitated their disease, they now have a series of new stressors to add to whatever they are already experiencing; neurological symptoms, an uncertain diagnosis, and an uncertain future.
Dealing with pre-existing stressors is important, and so is dealing with the stress of waiting for a diagnosis.
How this should be managed is something that MS patients themselves should be telling us.
Physical health: Once stress management strategies are in place, preparing the patient to optimise health outcomes is important too. Obviously if a previously healthy individual is experiencing sudden neurological symptoms, then something is terribly wrong inside their body.
The Australian medical model does not yet seem mature enough to launch an individual investigation into what is happening inside the person with MS (or suspected MS), other than for diagnostic purposes. Unfortunately, diagnosis often means a label and potentially either the offer of one of the few drug therapies approved for RRMS, or nothing.
Exercise: Unless a person is able to exercise, they will experience a cascade of dependency, so exercise is key, both before and after diagnosis, and if it was never formally part of a person’s life, then it probably should be now. Yet people with MS often complain of exercise intolerance. At the very least, the majority complain of fatigue, which most people with MS list as their worst symptom. Apart from anything else, people with disabling neurological symptoms should be warned of the dangers of deconditioning and of bed rest in particular. For a range of reasons, people with MS will need support with an exercise program, and this could be a standard part of the counselling and referral process in the pre-diagnostic period.
Diet: Apart from the theories which suggest that diet can be used in managing MS, poor diet is correlated with a range of negative health outcomes and so called ‘lifestyle’ diseases. Instead of just looking at food and drink inputs however, the notion of dietary support in MS could be widened to include complete analysis of gastrointestinal health. For instance, poor digestive health can produce a vitamin B12 deficiency that can precisely mimic MS, but there are a range of gastrointestinal problems that can negatively impact on overall health in general, and metabolic health specifically.
These health checks, plus dietary education, can at least be offered to the person with suspected MS, so that their individual nutritional health needs are maximised during the diagnostic period. This diagnostic period can be a long one, and in MS seems almost uniquely dependent on waiting for worsening disease entrenchment, in order to make the diagnosis.
As mentioned earlier, people with MS can experience worsening of disease outcomes with the more exercise they attempt. Optimising gastrointestinal health and nutrition may well be the key to rebuilding and maintaining their capacity to exercise. Individually optimised nutritional support should be presented in such a way as to be something that can be committed to as a lifelong practice.
Co-morbidities: As mentioned earlier, the pre-diagnostic period can be long. Whilst eliminating MS mimics and accumulating evidence in support of suspected MS, or waiting for a second attack for confirmation, co-morbidities can be examined. These can be illness states that run in parallel to MS, contributing to the overall MS burden, or they can be illness states that are frequently seen with MS, or partly due to MS, like sleep apnoea. In addition, there are many things which are thought to predispose people to MS. Things like infections, smoking habits, vitamin D status (and others) can all be examined. All of the systems of the body that could be impacting on the CNS in any way, should be examined. Just because someone has MS, doesn’t mean they can’t or won’t have other illnesses, habits and deficiencies that can negatively impact on the disease process. Actively looking for other disease processes and proactively treating them, can have profound benefits for the person with MS.
Conclusion:
People who are suspected of having MS in the pre diagnostic period can be regarded as a precious resource to themselves, others with MS, and the advancement of medical knowledge in general. They were previously healthy, and now there is an active disease process that is just beginning to show itself. Instead of looking at this as a diagnostic challenge that will result in a diagnostic label and a drug prescription, neurologists and allied health professionals can look at each person with suspected MS as an opportunity to advance our knowledge, and to provide the best possible holistic model of care available to the individual patient, and to everyone else with MS.
For each person with a biochemical reaction that is going wrong, a thorough medical examination of all states of dis-ease, plus the offer of nutritional support, exercise support, and stress management can make the pre-diagnostic period a time of great optimism and promise. In MS, time is of the essence, and there could be no better time to begin optimising health in all dimensions, than in the pre-diagnostic phase.
What might be missing - Diagnosis