Choices. Diagnosis. Read me

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1 Choices Diagnosis Read me

2 Diagnosis Diagnosing multiple sclerosis can be complicated, not least because there is no single test that conclusively indicates the presence of the condition. Multiple sclerosis can present different symptoms in different people at different times and the process of diagnosis can be a lengthy one. Symptoms of multiple sclerosis can be subtle, or more apparent and can be experienced for many months or years. Some symptoms such as mobility changes are more obvious, but some are not, for example, fatigue or sensory disturbances. There is no set pattern and some people will experience symptoms that others will not and these can also vary from time to time, occurring singly or in combination. Some people have mild symptoms, while others have problems that are moderate or severe, taking the form of attacks or relapses (a temporary worsening of symptoms). Other people experience a slow, sometimes almost imperceptible change in their physical condition with no obvious attacks. Unfortunately there is no one single test or procedure that can be used to diagnose MS. Sometimes people are offered an initial diagnosis, which turns out to be incorrect. It is often a case of watching and waiting to see if new symptoms appear or previous symptoms recur. This process can be frustrating; it is hard to accept that a conclusive diagnosis can take months, or years. Diagnosis is based on a number of things such as looking into medical history, neurological examinations and a series of tests. Other conditions need to be ruled out before a diagnosis can be confirmed. First steps to diagnosis In October 2014, the National Institute of Health and Care Excellence (NICE) issued new guidelines for the management of multiple sclerosis, including guidelines for the steps medical advisors, such as GPs and neurologists, should take to reach (or exclude) a diagnosis of MS. NICE suggests that the most common symptoms or clinical presentations a person would visit their GP with are Loss or reduction in vision in one eye, with painful eye movements Double vision Ascending sensory disturbance or weakness (a change in sensation or strength that moves up the body) Balance problems or clumsiness Altered sensation travelled down the back when bending the neck forward. Called Lhermitte s Syndrome, this can feel like finger being run down the spine, or a tingling feeling NICE also suggests that people presenting with these symptoms are often under 50 years old and may have had a previous history of neurological

3 symptoms. These symptoms have evolved over 24 hours and may have persisted over several weeks or months. If you are experiencing symptoms, it is important to make an appointment with their GP to discuss these symptoms. A GP will perform a number of blood tests to exclude alternative diagnoses, before referring you to a neurologist if MS is suspected. The blood tests NICE recommend a GP carry out before such a referral is made are below, although not all may be performed A full blood count Inflammatory marker test Liver function tests Renal function tests Thyroid function tests Calcium Glucose Vitamin B12 HIV serology test It is worth noting that many other conditions may and do produce symptoms almost indistinguishable from MS symptoms. Being referred to a neurologist Only a neurologist can make the diagnosis of MS. A neurologist will perform other tests to ensure that symptoms are consistent with an inflammatory process in the body and that all other alternative diagnoses have been excluded. The process starts with a neurological examination where your full medical history is taken. The neurologist will then perform simple tests to check movement, coordination, balance and reflexes. The neurologist performs these tests to establish whether there are signs of the inflammatory process in the body. These signs are called lesions and occur when the inflammation process has left scarring on the fatty myelin sheath that surrounds the nerve. A neurologist will need to establish that lesions have developed at different times, and in different areas of the body for a diagnosis of relapsingremitting MS. If the medical history and neurological examination suggest MS, more tests will be conducted to look for evidence in the body. The neurologist will make a diagnosis of MS based on established criteria, such as the revised 2010 McDonald criteria. The McDonald criteria are detailed in Further Information. Further tests may be suggested. MRI scanning A Magnetic Resonance Imaging scan or MRI is used to identify any areas of the brain or spinal cord that may have scarring. An MRI scanner consists of a large doughnut-shaped magnet with a tunnel in the centre. People are placed on a table that slides into the tunnel. It is a painless procedure, although quite noisy

4 and sometimes lengthy between 20 to 40 minutes. It can feel a little claustrophobic but headphones are provided through which music can be played, and you can contact the MRI s operator at any time. Sometimes a dye called gadolinium is used to enhance the image. The dye is injected into a vein before the MRI starts. The dye can assist the neurologist in determine what is a new active lesion, and what are older areas of scarring. NICE state that MS cannot be diagnosed on the basis of the MRI findings alone and other tests are needed, including the initial neurological examination. Lumbar puncture A lumbar puncture (also known as a spinal tap) is a procedure where a small sample of cerebrospinal fluid (CSF) is taken and analysed to test for any abnormalities that can indicate MS. CSF is the fluid that surrounds and protects the brain and spinal cord. This procedure is done by first injecting a local anaesthetic into the lower back and then inserting a needle between the lower discs of the spine to draw off the CSF. This procedure may be performed as either an In Patient or a Day Patient in a hospital because it is important to rest for several hours after the procedure to allow the body to recover. Evoked potentials These are very simple electrical tests that measure the time it takes for nerves to respond to stimulation. Visual Evoked Potentials (VEP) are most commonly used in the diagnostic process. A conducting gel and electrodes are applied to the scalp. For VEPs, the electrodes are applied to the rear (occipital region) of the scalp over the brain areas that register visual stimuli. The stimuli for VEP are delivered by a strobe light or a screen with a checkerboard pattern. The electrodes measure the time it takes for the eye to see the image and the nerve impulse to reach the occipital region of the brain. It is important to keep in mind that these tests do not always give a conclusive result. Mostly people with MS will show some lesions or areas of inflammation on a MRI but there are still a small proportion of people whose MRI shows nothing at all. As with a lumbar puncture, there are around 5% of people with MS with a negative result. In summary, a diagnosis of MS is still undertaken through a medical history, clinical and neurological assessment and judgment by a neurologist. After diagnosis After diagnosis, the neurologist will discuss next steps with you, including talking about what MS is, and the diseasemodifying therapies that may be available. The neurologist will talk about symptom management, and introduce local and national charities who can offer further support.

5 The neurologist will discuss legal requirements relating to diagnosis, such as ensuring that you are aware you need to notify the Driver and Vehicle Licensing Agency (DVLA) of their diagnosis. The neurologist will write to you confirming your diagnosis, and also let your GP know. If an MS Nurse is employed within the hospital, an appointment should be made with them in the weeks following diagnosis. Steps can be taken to manage your MS and treatment plans can help reduce attacks or slow down the progression of the disease. You may be put in touch with an MS Nurse and be given drugs that will help manage specific symptoms. Complementary therapies are available through the MS Therapy Centres at various locations around the UK. Our advisors will be happy to talk to you about the different therapies on offer. Questions you may want to ask your health professional Questions about MS Can you please tell me what the name multiple sclerosis means? What causes it? Will it keep getting worse or can I expect it to improve? How is it likely to progress? What percentage of people have it? How serious is it and what can I do to help lessen my symptoms? Can I pass this on to my family or are they likely to develop it? What should I be aware of? Can I still go to work? Can I still drive my car? Will I need to go into hospital for treatment? How often do I need to see a doctor/neurologist? Are there any further tests I need to confirm the diagnosis? Are there any support groups or help for people with MS? What happens next? Questions about medication How and when should I take this? Are there any foods that I should not take with this medicine? Can I drink alcohol with this medication? Will any other medicines be affected? Are there any activities I should not do whilst taking this? How should I store it? Are there likely to be any side effects/complications and what would they be? Can I reduce the side effects? Does it matter if I miss a dose and what should I do if that happens? Can you tell me about the medication, what it is and what it is supposed to do? How long will I be taking this for? If I feel ill on this medication, what should I do?

6 Questions about other treatments What other treatments are available? Can you explain how effective this treatment is compared to other treatments? What are the long term effects of this treatment? How can I tell if the treatment is working? What can be done if the treatment doesn t work? Emotional reactions to a diagnosis A diagnosis of MS is likely to make you think quite differently about your life. It is normal to worry about what is going to happen, if every little twinge is another sign or symptom, how the disease might progress and how it might affect your lifestyle. You may also be concerned about the effect MS will have on your family, friends, employment or hobbies. You may find that your immediate concerns will naturally be about you and your family, in particular: 1. Financial worries due to problems at work, especially if a relapse has occurred and time off work is needed 2. Family and friends, including how (or whether) to tell them and how they might take the news 3. Loss of social activity due to physical, mental or emotional difficulties One emotion that should be considered when trying to understand your reaction to your diagnosis is that of grief. Grief takes many forms; it is fundamentally about loss and with regards to a diagnosis, it is about the perceived loss of many things that you may have previously taken for granted in your life or fear you may no longer achieve. Grieving can be very therapeutic if you give yourself time and consideration to adjust and plan a new way of looking at life and dealing with any consequences of your symptoms. You may also react and feel in a way that is quite unlike your normal self. Be aware that this may arise from MS related nerve damage in your brain. The brain controls your conscious and unconscious actions and any damage to the frontal lobe (which is responsible for the control of emotions and physical expressions) can result in you acting in a way that you or your family and friends do not immediately recognise as your usual self. There is no right or wrong way to react to a diagnosis of MS, it is your MS and how it affects you will be unique to you, even if it is initially not understood. All the emotions you feel should be explored and discussed either with family, friends or if you need to, with healthcare professionals. At MS-UK we have a great deal of experience and understanding of MS. We know that the point of diagnosis is a difficult time when life adjustments may be necessary and when thoughts and

7 feelings can be overwhelming. Managing that uncertainty can be made easier by knowing where to go for help and by having someone to talk to. We will provide emotional support and explain your choices so that you are provided with everything you need to be able to choose the right pathway for you. If you feel you would like some emotional support, we are here for you, but if you feel that you need a qualified counsellor, then we can help signpost you to the right place for your needs. You can contact the Helpline on , by at or via our live web chat service at Further information McDonald Diagnostic criteria The MRI, together with the lumbar puncture in some cases, provide the evidence to be reviewed alongside the McDonald criteria to diagnose MS. The criteria states that an attack or relapse must have lasted for at least 24 hours, and must be neurological in nature that is typical of what is seen with MS. There must be at least 30 days between the first attack and the subsequent attack to be counted as 2 separate events. These attacks may be seen clinically or on the MRI. Further reading The newly diagnosed booklet by MS-UK Is it MS? The McDonald criteria were devised in 2001 by a team led by Professor Ian McDonald, and were most recently revised in The criteria are used to seek to establish evidence of damage to the central nervous system (CNS) comprising of the brain and spinal cord. The criteria looks at the evidence of damage in two ways: is the damage disseminated in time meaning, is there evidence of damage in the CNS at different dates and, is the damage disseminated in space meaning, is the damage in different parts of the CNS.

8 Recommended diagnostic criteria for multiple sclerosis Recommended diagnostic criteria for multiple sclerosis Clinical presentation 2 or more attacks 2 or more attacks Objective Additional data required to make diagnosis lesions 2 or more None; clinical evidence will suffice (additional evidence desirable but must be consistent with MS) 1 Dissemination in space by MRI Or up to two MRI detected lesions consistent with MS plus positive CSF Or await a further clinical attack involving different site to suggest dissemination in space 1 attack 2 or more Dissemination in time by MRI Or second clinical attack 1 attack 1 Dissemination in space by MRI Or up to two MRI lesions consistent with MS plus positive CSF and dissemination in time demonstrated by MRI (i.e. new lesion seen since the original MRI) Or second clinical attack 0 (neurological progression is suggestive of MS. This is typical for a diagnosis of primary progressive MS 1 Positive CSF and dissemination in space by MRI Or abnormal VEP plus abnormal MRI and dissemination in time by MRI Or continued progression for one year either retrospectively, or ongoing Source: Recommended Diagnostic Criteria for MS: 2010 revisions to the McDonald criteria: Annals of Neurology 2011

9 How we create our Choices leaflets MS-UK believes we must listen to the voices of people affected by multiple sclerosis to shape the information and support we provide. It is these people that bring us perspectives that no one else can give. For every Choices leaflet we produce, MS-UK consults the wider MS community to gather feedback, and uses this to inform content. All of our Choices leaflets are then reviewed by the MS-UK Virtual Insight Panel before they are published. Thank you to everyone affected by MS who made this leaflet possible. Sources Recommended Diagnostic Criteria for MS: 2010 revisions to the McDonald criteria: Annals of Neurology 2011 Keep in Touch MS-UK Unsworth House Hythe Quay Colchester Essex CO2 8JF Tel: MultipleSclerosisUK Date: June 2014 Registered Charity Number:

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