About MS > Newly Diagnosed

If you, or someone close to you has been recently diagnosed with MS, you probably have a lot of questions about this condition and what to expect.

This section covers the process of diagnosing MS and addresses some of the common issues that arise soon after diagnosis, such as who to tell and where to get information or help.

Being diagnosed with MS is not a life sentence, and many people with MS do not have a disability. There are many positive steps you can take to manage your MS symptoms and make the most of your health and well being. Some of these are outlined in the section on Living with MS.

Diagnosis

MS is not always easy to diagnose. Each person with MS has a different pattern of symptoms, and some of these symptoms can be caused by a number of factors. There is no one test to confirm MS, and other conditions with similar symptoms may need to be ruled out first.

Because of this complexity, different types of medical tests or examinations may need to be carried out by a Neurologist before a diagnosis can be made. This process can sometimes take a bit time. It may even be only after symptoms have happened again, months or sometimes years later, that a diagnosis of MS can be made.

Diagnostic tests

Specific diagnostic criteria have been developed to help Neurologists in making a diagnosis of MS. Your Neurologist will compare the results of your examination and tests to these criteria to determine if you have MS. The common types of tests are explained here:

Neurological examination

Your neurologist will ask you about the symptoms you are experiencing and any symptoms or problems you may have had in the past. A physical examination checks the functioning of your nerve pathways that are involved in movement, reflexes and sensation, and for any problems with your coordination, balance, sensation, eye movements, and speech.

Magnetic Resonance Imaging (MRI)

Magnetic Resonance Imaging (MRI) scans are used to take pictures of inside your brain and spinal cord using a strong magnetic field. The picture looks a bit like an x-ray, but it is detailed enough to be able to show up any areas of tissue damage or lesions. To get an accurate, clear image you will be asked to lie very still on a flat bed that is then moved into the centre of the MRI scanner. The scan takes up to 30 minutes and is completely painless, although some people do not like the feeling of being in an enclosed space.

Evoked potentials

This test records the time it takes for nerves in your brain to receive messages. Small sensors are placed on your head to monitor your brain waves while you are shown pictures or sounds are played. In MS, the signals can be slower than normal as a result of damage to myelin or nerves. Measuring evoked potentials is a painless, non-invasive procedure.

Lumbar puncture

Sometimes called a spinal tap, a lumbar puncture takes place under a local anaesthetic. A needle is inserted into the space around your spinal cord and a small sample of cerebrospinal fluid is taken and tested for abnormalities. The presence of antibodies in this fluid indicates that the immune system has been at work in the central nervous system, possibly as a result of MS disease activity. Because of the availability of other non-invasive diagnostic tests, this procedure is only used when other test results cannot confirm MS.

Other tests

You may also have other types of tests, such as blood tests, and depending on your symptoms, your eyesight and hearing may be examined.

Outcome of diagnostic tests

Your neurologist will explain your diagnosis to you after careful consideration of all the evidence they have collected. There are three possible outcomes of the tests and examinations:

• You do not have MS
• You have possible MS - this may happen if your tests are not clear, for example your medical history and examination suggest MS, but the MRI scan does not support a definite diagnosis.
• You have MS

Whatever the outcome, your Neurologist, MS Nurse and GP will discuss with you and your family your options and answer any questions you have. Your MS Field Worker can also provide you with information and let you know what services are available in your area.

What to expect

Everyone who is diagnosed with MS feels and behaves differently. There is no right or wrong way to react. You may feel shocked, upset, angry, scared or even relieved. You may find that you or other people react quite differently to how you expected.

There are several questions that most people think about around the time of an MS diagnosis. It is normal to have a lot of questions, and there are a range of places that you can find accurate, reliable information and support to help you find answers and make decisions that are best suited to you.

Who should I tell?

Telling people about your diagnosis can be difficult as other people may not know what MS is, and they may have questions that you feel you can’t answer. However, most people find that discussing the diagnosis with their partner, family or close friends is beneficial for positive emotional support and understanding.

It is usual for people to be unsure about disclosing their diagnosis to employers, work colleagues or other acquaintances. It may be helpful to first discuss with your MS Field Worker any concerns you have about disclosing your diagnosis to others. Information is also available on the rights of people with disabilities in the workplace.

Why me?

People who are diagnosed with MS often ask themselves why it happened to them. Some people may wonder if they have done anything to cause it. There is no way of predicting who will get MS and it is not a condition that is caused by lifestyle factors. However, there are some things you can do to improve your well being and help to take control of MS.

Having MS can take time to get used to and some changes may be required, but with a positive attitude and appropriate support from your healthcare professionals you will have the best chance of managing your symptoms and leading a normal, healthy and active life.

What will happen?

MS is not a terminal illness, but it is a lifelong condition. The majority of people with MS, however, live full and active lives without severe disability. MS is unlikely to affect your expected life span.

The course of MS is different for everyone. In nearly all cases it is impossible to know what this pattern will be for any one person. Probably the hardest thing to come to terms with is the sense of uncertainty surrounding MS. MS symptoms can occur at any time and there is no way of knowing how long they will last or what their impact will be. Your Neurologist will be able to give you the best idea of what you can expect, and your MS Nurse or Field Worker can give you advice on what to do if your symptoms change or are causing you concern.

There are positive steps that you can take to reduce the feelings of worry and anxiety that are caused by living with the uncertainty of MS. Professional and experienced support from MS Field Workers is available to help with practical and emotional issues. Some people also find that meeting other people with MS helps them to understand the disease better and to feel more confident in coping with its impact.

Where can I get more information?

Getting up-to-date, accurate information can help you gain the knowledge you need to make informed decisions and reduce your feelings of distress or anxiety. MS Auckland Region provides a free information and Library service and Field Workers are available to discuss any areas you are unsure about.

There is a lot of information about MS available on the internet. However, some websites can provide misleading or incorrect information. It is wise to be extremely cautious with websites suggesting or selling health supplements or other treatments for MS. It is highly recommended that you discuss any proposed treatments with your GP, Neurologist or MS Nurse before you make a decision.