PRE DIAGNOSIS:
Neurological dysfunction will usually see a person referred by their GP to a neurologist, a transition from normality to becoming a chronic disease ‘patient’ that can be a thoroughly dis-empowering place to be. With MS, the list of physical and psychological symptoms is long, and each one of them is thoroughly unpleasant on its own. This is your body and your life. You are entitled to become the most empowered patient you can be.
At the beginning of this process, you certainly cannot anticipate that you will emerge as a person with progressive MS. However, neurological impairment implies that something is seriously amiss, and steps should be taken to prepare yourself.
Journaling and collecting records: Please consider that the first thing that you can do for yourself is to begin a chronological journal about your medical experiences and symptom development, and to start to keep all copies of relevant test results and reports between specialists and your GP. This could be a long road, and you will probably feel more comfortable if you can refer to key steps along the way. Journaling helps express your feelings, and to keep track of how you are going physically and bio-chemically.
Asking questions, recording answers: The pre –diagnostic testing process may be a long one that lasts months or years, and there may be a lot of tests. Don’t be afraid to ask what each test is looking for, and why it is being run. Ask for a copy of the report and what it means. Put the information in your journal or home based medical file and date it.
A neurologist cannot diagnose a condition until they have sufficient evidence to do so. However, the clinical picture can begin to emerge quite early. If the doctor has eliminated most differential diagnoses, it will begin to look more and more like MS, but they may be waiting for one or more crucial pieces of evidence before making a firm diagnosis, and as noted, this can take months or even years. Please consider explaining to your neurologist that you want to prepare yourself for the eventual result, and ask them to tell you if a likely diagnosis is emerging yet. If they indicate that it is looking more and more like MS, ask them if it is looking more like a relapsing remitting pattern, or a more progressive pattern.
Apart from preparing yourself emotionally, physically and socially for your diagnosis, it is important to know where things are heading from a financial perspective. Once you have a diagnosis it may be too late to obtain certain financial products. Now may be the time to obtain financial advice and review your financial plans, before a diagnosis is made.
Once you have a likely diagnosis, you may begin to research the illness, so that you can accustom yourself to what the future may hold.
NOTE: There are currently no disease-modifying drugs for progressive MS. If your doctor is leaning towards a diagnosis of progressive MS because of your current course of illness, or your age and/or gender, and you feel that a pharmaceutical therapy is important to you, then it is important to demonstrate a distinct ‘attack’ of MS, followed by full or partial recovery in order to obtain a disease - modifying drug. In this case, during an attack of neurological symptoms, or a worsening of symptoms, you are entitled to ask for a course of steroids, and to highlight any recovery you make to the neurologist as a result. Please note that steroids are powerful drugs and come with potentially life-altering side effects. Their benefits should be carefully weighed against their potential detriments in your unique circumstances.
The relationship between yourself and your doctor(s):
In NSW there is a charter of health rights and responsibilities http://www0.health.nsw.gov.au/policies/pd/2011/pdf/PD2011_022.pdf
This charter outlines what patients can expect from their healthcare provider. The Australian Medical Association code of ethics can be found here https://ama.com.au/position-statement/ama-code-ethics-2004-editorially-revised-2006 and the Australian Medical Council’s Code of Conduct for Australian Doctors can be found here http://www.health.nt.gov.au/library/scripts/objectifyMedia.aspx?file=pdf/39/02.pdf
These codes emphasise that medical care is a collaboration between practitioner and patient and patients have a right to be fully informed at every step. Two of the most important considerations in engaging any doctor is their ability, and their dedication to your health outcomes. Ideally a doctor will give you sufficient time and be a warm and compassionate human being. However if you are referred to a doctor who has little or no empathy, but is a highly competent and dedicated medico, their ‘bedside manner’ can be overlooked.
An abrasive doctor who appears to have little focus on your health outcomes is only likely to make a bad situation worse and an empathetic doctor who has little focus on your health outcomes is unlikely to be much comfort in the long run.
MS is a chronic (lifetime) condition, and if you feel that the support you are getting from your neurologist, or GP is not sufficient, then you may consider looking for someone who will suit you better. However, access to doctors can be limited by a number of factors (especially in regional areas), and it may be very difficult to find a specialist who suits you.
Consider this though; once you have a diagnosis of progressive MS, your neurologist or a general practitioner may have very little to offer you. It may be wise to accept the limitations to the model of care you are experiencing, make the best of the services offered and search elsewhere for coherent medical support.
A day in the life of a neurologist: Your neurologist has a whole other life that doesn’t involve healthcare, with all the responsibilities that private lives bring, just like the rest of us. They are not invincible or infallible either. They are subject to the same aches, pains, illnesses, foibles, conceits, major and minor setbacks and irritations as the rest of the planet. When they arrive at work, their day will likely have started early and may end late. If they are attached to a hospital, they may be almost perpetually on call.
They are probably running their own practice with all the business and staffing worries that brings. Most neurologists are generalists, who see a range of patients with a bewildering range of neurological illnesses and injuries, not just MS. Hopefully they are finding the time to brush up on all the latest research across all of the illnesses they are likely to see. Especially MS! Depending on their involvement, they may be teaching at a university, training staff at a hospital, doing hospital rounds and surgery, heading up departments or serving on committees, as well as seeing patients in their rooms. When they see patients they may be seeing someone every thirty minutes or so, snatching a coffee break and a short lunch, and typing up patient notes, writing letters for patients, and creating reports to referring GP’s. They may have a range of other professional and social obligations and commitments that make demands on their time. They are busy people.
If at the outset you are looking to your neurologist to form a close relationship with you and take a deep personal interest in your care, with a whole-of-life perspective, it may be wise to evaluate exactly how busy (and expensive) they are, and whether it may be better to seek that model of care from another doctor who is more on your wavelength, or a range of health care professionals who can meet the totality of your needs, each in their own way. MS clinics that are attached to hospitals in major cities may offer a more integrated model of care.
Listen to your doctors: Apart from following their medical advice, what are they really saying to you? Are they saying little or nothing? Is getting information from them like pulling teeth? Are they telling you they have a special interest in an illness that is not what you have? Are they telling you that they are just a generalist and can’t really help you with the kind of approach you want to take? Do they make you feel that a lot of what you are telling them about your health problems is ‘all in your head’? Are they dedicated to their work or do you get the feeling they would rather be elsewhere? Are they pessimistic about your prospects? Do they dismiss stories of recoveries from advancing MS as having a hysterical component? Are they supportive of your efforts to maximize your health? Do they tell you about new research that offers promise? Are they genuinely interested in the research you bring them or lifestyle changes you adopt, or are they dismissive? Do they refer patients for trials of new therapies? Do they order tests and then show little interest in unusual results that worry you? Do you feel they have the capacity to understand the tests, or do they dismiss unusual results or downplay them? Do they treat you like a label or a closed book because of your MS? When you complain about a symptom, do they say things like “well we do see that in MS” and avoid investigating further? Is their first response to a problem to prescribe a potentially toxic drug without even talking through the possible consequences with you? Do they investigate what is going on in your body before prescribing a drug, or are they taking an educated gamble with your healthcare? Are they observant? Do they do a physical exam from time to time, or do they ignore the basics? Are they proactive and pre thinking the issues that may come up for you, or are they always reactive? Do they ask how you are going generally and show genuine interest in the answer? Do they understand the impact of chronic illness? Are their notes and prescription lists and referral letters up to date? Do they give you enough time, or do you always feel rushed? Do they see you as an individual or just as a patient grouping? Do they look at you as a whole person, or just as the symptom of the day? Do they remember your name? Do they show that they have read the documentation you gave them?
Is your doctor saying or doing things that surprise you, or make you feel that you are not on the same page? They may not be saying things directly, but there may be a disturbing subtext to your interactions. You may have to 'read between the lines' and ignore red flags at your peril.
As a person with a potentially devastating chronic illness, you need a varied team of healthcare professionals working with you, and each player needs to do their part to maximise your health outcomes. A doctor who has not got their heart in the game, or who is not pulling their weight can either be retired, or at least sidelined, so that other players can shine.
Limbo land is an uncomfortable place to be. The uncertainty can be incredibly draining, and anxiety producing, and many people are relieved to finally get a diagnosis, even one as devastating as MS, because at least they now have a name for what ails them, an understanding amongst the medical and wider community of what they are going through, a recognised disability that may attract various means of support, and a disease-based support community to tap into.
Preparing yourself for diagnosis: If your doctor has indicated that you have probable MS, but there may still be months or years of testing to go through, or the doctor is obliged to wait for the disease to do you more damage before being able to make the diagnosis, then it is wise to prepare yourself for the possibility that you will eventually get a diagnosis of MS. This may involve reading everything you can about the disease, joining your local MS society, obtaining counselling, talking things over with friends and family, putting your finances in order, and changing your lifestyle to the healthiest possible, by considering moving residences, re-evaluating your work, social commitments and recreation habits, de-stressing, and adopting healthy eating, drinking, supplementation, and exercise routines. With MS, time is of the essence and adopting the healthiest lifestyle possible is something you can gift to yourself. If there is room for improvement, why delay? Please see the ‘exploring possibilities’ page for more information.
DIAGNOSIS
Neurological dysfunction will usually see a person referred by their GP to a neurologist, a transition from normality to becoming a chronic disease ‘patient’ that can be a thoroughly dis-empowering place to be. With MS, the list of physical and psychological symptoms is long, and each one of them is thoroughly unpleasant on its own. This is your body and your life. You are entitled to become the most empowered patient you can be.
At the beginning of this process, you certainly cannot anticipate that you will emerge as a person with progressive MS. However, neurological impairment implies that something is seriously amiss, and steps should be taken to prepare yourself.
Journaling and collecting records: Please consider that the first thing that you can do for yourself is to begin a chronological journal about your medical experiences and symptom development, and to start to keep all copies of relevant test results and reports between specialists and your GP. This could be a long road, and you will probably feel more comfortable if you can refer to key steps along the way. Journaling helps express your feelings, and to keep track of how you are going physically and bio-chemically.
Asking questions, recording answers: The pre –diagnostic testing process may be a long one that lasts months or years, and there may be a lot of tests. Don’t be afraid to ask what each test is looking for, and why it is being run. Ask for a copy of the report and what it means. Put the information in your journal or home based medical file and date it.
A neurologist cannot diagnose a condition until they have sufficient evidence to do so. However, the clinical picture can begin to emerge quite early. If the doctor has eliminated most differential diagnoses, it will begin to look more and more like MS, but they may be waiting for one or more crucial pieces of evidence before making a firm diagnosis, and as noted, this can take months or even years. Please consider explaining to your neurologist that you want to prepare yourself for the eventual result, and ask them to tell you if a likely diagnosis is emerging yet. If they indicate that it is looking more and more like MS, ask them if it is looking more like a relapsing remitting pattern, or a more progressive pattern.
Apart from preparing yourself emotionally, physically and socially for your diagnosis, it is important to know where things are heading from a financial perspective. Once you have a diagnosis it may be too late to obtain certain financial products. Now may be the time to obtain financial advice and review your financial plans, before a diagnosis is made.
Once you have a likely diagnosis, you may begin to research the illness, so that you can accustom yourself to what the future may hold.
NOTE: There are currently no disease-modifying drugs for progressive MS. If your doctor is leaning towards a diagnosis of progressive MS because of your current course of illness, or your age and/or gender, and you feel that a pharmaceutical therapy is important to you, then it is important to demonstrate a distinct ‘attack’ of MS, followed by full or partial recovery in order to obtain a disease - modifying drug. In this case, during an attack of neurological symptoms, or a worsening of symptoms, you are entitled to ask for a course of steroids, and to highlight any recovery you make to the neurologist as a result. Please note that steroids are powerful drugs and come with potentially life-altering side effects. Their benefits should be carefully weighed against their potential detriments in your unique circumstances.
The relationship between yourself and your doctor(s):
In NSW there is a charter of health rights and responsibilities http://www0.health.nsw.gov.au/policies/pd/2011/pdf/PD2011_022.pdf
This charter outlines what patients can expect from their healthcare provider. The Australian Medical Association code of ethics can be found here https://ama.com.au/position-statement/ama-code-ethics-2004-editorially-revised-2006 and the Australian Medical Council’s Code of Conduct for Australian Doctors can be found here http://www.health.nt.gov.au/library/scripts/objectifyMedia.aspx?file=pdf/39/02.pdf
These codes emphasise that medical care is a collaboration between practitioner and patient and patients have a right to be fully informed at every step. Two of the most important considerations in engaging any doctor is their ability, and their dedication to your health outcomes. Ideally a doctor will give you sufficient time and be a warm and compassionate human being. However if you are referred to a doctor who has little or no empathy, but is a highly competent and dedicated medico, their ‘bedside manner’ can be overlooked.
An abrasive doctor who appears to have little focus on your health outcomes is only likely to make a bad situation worse and an empathetic doctor who has little focus on your health outcomes is unlikely to be much comfort in the long run.
MS is a chronic (lifetime) condition, and if you feel that the support you are getting from your neurologist, or GP is not sufficient, then you may consider looking for someone who will suit you better. However, access to doctors can be limited by a number of factors (especially in regional areas), and it may be very difficult to find a specialist who suits you.
Consider this though; once you have a diagnosis of progressive MS, your neurologist or a general practitioner may have very little to offer you. It may be wise to accept the limitations to the model of care you are experiencing, make the best of the services offered and search elsewhere for coherent medical support.
A day in the life of a neurologist: Your neurologist has a whole other life that doesn’t involve healthcare, with all the responsibilities that private lives bring, just like the rest of us. They are not invincible or infallible either. They are subject to the same aches, pains, illnesses, foibles, conceits, major and minor setbacks and irritations as the rest of the planet. When they arrive at work, their day will likely have started early and may end late. If they are attached to a hospital, they may be almost perpetually on call.
They are probably running their own practice with all the business and staffing worries that brings. Most neurologists are generalists, who see a range of patients with a bewildering range of neurological illnesses and injuries, not just MS. Hopefully they are finding the time to brush up on all the latest research across all of the illnesses they are likely to see. Especially MS! Depending on their involvement, they may be teaching at a university, training staff at a hospital, doing hospital rounds and surgery, heading up departments or serving on committees, as well as seeing patients in their rooms. When they see patients they may be seeing someone every thirty minutes or so, snatching a coffee break and a short lunch, and typing up patient notes, writing letters for patients, and creating reports to referring GP’s. They may have a range of other professional and social obligations and commitments that make demands on their time. They are busy people.
If at the outset you are looking to your neurologist to form a close relationship with you and take a deep personal interest in your care, with a whole-of-life perspective, it may be wise to evaluate exactly how busy (and expensive) they are, and whether it may be better to seek that model of care from another doctor who is more on your wavelength, or a range of health care professionals who can meet the totality of your needs, each in their own way. MS clinics that are attached to hospitals in major cities may offer a more integrated model of care.
Listen to your doctors: Apart from following their medical advice, what are they really saying to you? Are they saying little or nothing? Is getting information from them like pulling teeth? Are they telling you they have a special interest in an illness that is not what you have? Are they telling you that they are just a generalist and can’t really help you with the kind of approach you want to take? Do they make you feel that a lot of what you are telling them about your health problems is ‘all in your head’? Are they dedicated to their work or do you get the feeling they would rather be elsewhere? Are they pessimistic about your prospects? Do they dismiss stories of recoveries from advancing MS as having a hysterical component? Are they supportive of your efforts to maximize your health? Do they tell you about new research that offers promise? Are they genuinely interested in the research you bring them or lifestyle changes you adopt, or are they dismissive? Do they refer patients for trials of new therapies? Do they order tests and then show little interest in unusual results that worry you? Do you feel they have the capacity to understand the tests, or do they dismiss unusual results or downplay them? Do they treat you like a label or a closed book because of your MS? When you complain about a symptom, do they say things like “well we do see that in MS” and avoid investigating further? Is their first response to a problem to prescribe a potentially toxic drug without even talking through the possible consequences with you? Do they investigate what is going on in your body before prescribing a drug, or are they taking an educated gamble with your healthcare? Are they observant? Do they do a physical exam from time to time, or do they ignore the basics? Are they proactive and pre thinking the issues that may come up for you, or are they always reactive? Do they ask how you are going generally and show genuine interest in the answer? Do they understand the impact of chronic illness? Are their notes and prescription lists and referral letters up to date? Do they give you enough time, or do you always feel rushed? Do they see you as an individual or just as a patient grouping? Do they look at you as a whole person, or just as the symptom of the day? Do they remember your name? Do they show that they have read the documentation you gave them?
Is your doctor saying or doing things that surprise you, or make you feel that you are not on the same page? They may not be saying things directly, but there may be a disturbing subtext to your interactions. You may have to 'read between the lines' and ignore red flags at your peril.
As a person with a potentially devastating chronic illness, you need a varied team of healthcare professionals working with you, and each player needs to do their part to maximise your health outcomes. A doctor who has not got their heart in the game, or who is not pulling their weight can either be retired, or at least sidelined, so that other players can shine.
Limbo land is an uncomfortable place to be. The uncertainty can be incredibly draining, and anxiety producing, and many people are relieved to finally get a diagnosis, even one as devastating as MS, because at least they now have a name for what ails them, an understanding amongst the medical and wider community of what they are going through, a recognised disability that may attract various means of support, and a disease-based support community to tap into.
Preparing yourself for diagnosis: If your doctor has indicated that you have probable MS, but there may still be months or years of testing to go through, or the doctor is obliged to wait for the disease to do you more damage before being able to make the diagnosis, then it is wise to prepare yourself for the possibility that you will eventually get a diagnosis of MS. This may involve reading everything you can about the disease, joining your local MS society, obtaining counselling, talking things over with friends and family, putting your finances in order, and changing your lifestyle to the healthiest possible, by considering moving residences, re-evaluating your work, social commitments and recreation habits, de-stressing, and adopting healthy eating, drinking, supplementation, and exercise routines. With MS, time is of the essence and adopting the healthiest lifestyle possible is something you can gift to yourself. If there is room for improvement, why delay? Please see the ‘exploring possibilities’ page for more information.
DIAGNOSIS