What tests might be done?
To start with, you might have blood tests that look for vitamin deficiencies, infections or clues to other conditions that might account for your symptoms. These might be organised by your GP before referring you on to specialist services.
MRI (magnetic resonance imaging) is often used for MS diagnosis and then also for monitoring how you are doing on treatment or following a relapse. The scan doesn't hurt, but you do need to lie still for 10-20 minutes in the scanner, which can be noisy. The MRI scan looks at your brain and spinal cord, and can show whether there are any scars caused by inflammation around your nerves.
Often, the diagnosis process for childhood MS involves testing the fluid that surrounds the brain and spinal cord. This involves a lumbar puncture, where a small sample of this fluid is drawn out using a long needle inserted between the bones of your spine. You will need to lie still on your side while the lumbar puncture is done, and then rest and drink fluids for a while afterwards. Some people get headaches afterwards, or find that the needle is uncomfortable. The fluid is checked for the presence of antibodies to myelin proteins, or fragments of myelin that would indicate inflammation and damage to your nerves.
MS affects the speed at which your nerves transmit electrical signals. A visual evoked potential test is sometimes used to measure how quickly your nerves send a message from your eyes to your brain. To do this test, you need to sit with a number of sensors attached to your head, and watch a screen showing you geometric patterns. The sensors are stuck on with sticky pads, and the test does not hurt at all.
What else could cause these symptoms?
MS can be difficult to diagnose, as there are other conditions in children which have very similar symptoms. Initially, a child may be given a diagnosis of acquired demyelinating syndrome (ADS), which is an umbrella term for a collection of related conditions, until the specific one can be identified. Demyelinating conditions all cause damage to the protective covering (myelin sheath) that surrounds nerve fibres in the brain and spinal cord. They often have some symptoms in common, but the best treatments might be different for each one.
Apart from MS, other demyelinating conditions include ADEM (acute demyelinating encephalomyelitis), NMO (neuromyelitis optica), transverse myelitis (TM) and optic neuritis (ON). Other possible causes for the symptoms might be a vitamin B12 deficiency or a brain infection.
Some children never go on to experience a second demyelinating attack, so would never be diagnosed with MS. If all of the other demyelinating conditions had been ruled out, they might be given a diagnosis of CIS, which stands for clinically isolated syndrome.
To get to a diagnosis of MS, you may have had several appointments and tests, and spoken to lots of different health professionals on the way. This can be frustrating but is quite a common experience. Eventually though, you will have an idea about what is causing the symptoms you noticed. You may now have to start thinking about how best to manage the condition going forward.
Who will provide my healthcare?
In England and Wales, all people under eighteen with MS should be seen by a specialist paediatric MS service. If you are nearly eighteen when you are diagnosed, you may be seen by adult MS services, but you and your health team should be able to get advice or additional support from the paediatric team if required. Young people diagnosed in Northern Ireland or Scotland may also be referred to the specialist paediatric MS teams around England if required.
It's likely that you will have a neurologist and an MS Nurse responsible for your care, and you may also see other health professionals such as therapists, neuro-psychologists or imaging specialists. In all appointments, it can be good to ask ‘what happens next?’ so you are always clear about the way forward and the timescales involved. It is fine to ask for clarification if you are not sure what you should do, or expect to happen. Your GP should receive copies of all your tests and treatment plans directly from the MS team. You can ask to see these and keep copies too.
You might find it useful to keep a diary of symptoms so you can keep track of how symptoms come and go. You can share a summary of your diaries with the neurologist or nurse at your next appointment. There are several apps and online tools that can make this easy, and your MS team might have a favourite one that they recommend.
Being a young person with a long-term condition may mean having to make adjustments or think about the consequences of things you choose to do. Having a healthy lifestyle is key to managing MS well, so you should make yourself aware of the implications of smoking, drinking alcohol, eating unhealthily or taking recreational drugs on your MS. Your MS Nurse can talk these things over with you too.
Until you are eighteen, your parents or carers will help you communicate with your health team, and share the responsibility of thinking about medication, lifestyle and symptom management. Part of the process of transition from child to adult services is making sure that you are fully informed and ready to take this on yourself when you need to. You should be supported for as long as you want, and should always feel able to express your views about what you want to happen next in your care.
Whether you are the young person with MS or their parent, try to remember that although having MS can be tough on the whole family, it is no-one's fault. If you can keep talking to each other, and be open about your feelings, you will likely find it easier to manage. If there are other children in the family, they might also be distressed, resentful or anxious about MS, particularly if they have not had accurate information that they understand. You could share one of our books written for children and young people, or look for further resources on MS written for young people, to help them learn more.
Multiple sclerosis in children: an update on clinical diagnosis, therapeutic strategies, and research
Lancet Neurol. 2014 Sep; 13(9): 936–948.
Full article (link is external)