It can feel like you are in limbo. You are on a waiting list to see a neurologist. Or you have an appointment, but it’s still months away. It can be a very difficult time. As a healthcare charity that helps make sense of MS, we are here to help you through the challenges ahead.
Our information below will help you prepare for the next steps towards a diagnosis and access the medical help that’s available now. You'll also find tips for work and financial support and ways to boost your physical and mental health.
Help for symptoms
Getting help for current symptoms shouldn’t go on hold just because you have a referral to a neurologist. Managing symptoms will not affect or delay the diagnostic process, but it may offer some relief in the meantime.
Speak to your GP to see what can be done now. As general practitioners, they will treat you on a symptom-by-symptom basis while you wait for a diagnosis. You may also benefit from a specialist referral such as:
If you find that your GP defers everything that may be ‘MS-related’ to your neurologist, ask what they can do to relieve your symptoms in the meantime. Tell your doctor if any new symptoms appear or existing ones get worse. They may contact the hospital on your behalf if they think you need to be seen sooner. Some people find that their symptoms require immediate hospital attention. Trust your judgement. You know your own body, and you know when something feels serious and needs acting on.
Preparing for the appointment
It helps to know what to expect from your first neurology appointment. It is an initial, fact-finding conversation to assess what needs to happen next. This is not a diagnosis appointment, which can be disappointing after a long wait.
You will need to answer questions about your health, including things from the past. It is a good idea to give your medical history some thought ahead of your appointment and note down dates and symptoms in the order they appeared.
Think about what you want to get out of your appointment and write down any questions you have. As the list is likely to be long and time is short, it may help to group the questions into themes and have a priority list of four or five things that you want to ask first.
We asked consultant neurologist, Dr Agne Straukiene, for her suggestions to help you prepare. Neurologists need to cover a lot of ground during the appointment, so this five-minute explanation will help:
Consultant neurologist Agne Straukiene covers what you need to know before your first appointment
Managing the uncertainty
The uncertainty is often the worse thing about this time. Reading up on multiple sclerosis and the diagnostic process from trusted information sources, may bring a bit of reassurance. Try to keep in mind that even if you know someone with MS, no two experiences are the same. No one wants a life-long condition, but it may help knowing that there is a choice of treatments available for multiple sclerosis.
Only a neurologist can diagnose MS, and they do so using a combination of medical history, examination, MRI, laboratory results and the McDonald criteria. It means that other health professionals involved in tests and scans will pass their findings on to your neurologist for their interpretation. Your scan results can take time to come through because they are batched with others.
With every new investigation ask your health professional to explain the test and its implications, when and how you will get the results, and what happens next. Appointments can be stressful and leave you with more questions. Take the opportunity to raise these with your health professional, and if anything is unclear, ask them to repeat it.
Our freephone helpline is here for you too. We speak to many people in similar situations, looking for general information about MS that they can trust at a difficult time. Do get in touch.
MS is not always straightforward to diagnose, and you may find yourself facing an outcome you didn’t expect. Being aware of potential curveballs that can lie ahead may help:
There may not be enough evidence to support an MS diagnosis. A period of wait and see may be required before another MRI scan is carried out. Ask your neurologist what you can expect in terms of review and follow-up.
You are diagnosed with clinically isolated syndrome [CIS]. This can be a first and one-off episode of neurological symptoms, but it can also be an early sign of MS. If you are considered at high risk of developing MS, your neurologist may discuss disease modifying treatment.
You may remain undiagnosed while still affected by symptoms. This can be very frustrating, but it should not stop you from accessing help for symptom management. Speak to your neurologist or GP about the possibility of getting a specialist referral for your different symptoms.
Why the long wait?
You are not alone in asking this question. We regularly receive calls from people asking how long it can take to get a diagnosis, and the situation can vary greatly around the country.
There are no easy answers. Even with a full workforce, MS is a difficult condition to diagnose and requires careful consideration and judgement. It can take time and your neurologist will want to make every effort to avoid a potential misdiagnosis.
Delays in getting a diagnosis for MS and onto treatment can add to concerns. You may find it reassuring to listen to our podcast interview with neurologist Emma Tallentrye. She shares her views on 'time is brain', diagnosis delays, and why milder forms of MS can sometimes take time to diagnose:
Some people may find that their unexplained symptoms and the long wait for a diagnosis can have a knock-on effect on jobs and finances.
MS is automatically protected by the Disability Discrimination Act (Northern Ireland) and Equality Act (rest of the UK). The legislation also protects those with aphysical or mental impairment, which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. It means that if you have a health problem that meets the conditions, you may be covered by the legislation before diagnosis.
An important part of the legislation is being able to ask your employer to make reasonable adjustments to help support you at work. You can find information about these here:
Employees need a fit note from a registered healthcare professional if you are off sick for more than seven days (including weekends and non-working days). It will state if you are:
not fit to work
may be fit to work
If appropriate, it may include advice to help you and your employer when you return to work. Fit notes can cover up to three months at a time and may include a review date.
Sometimes employers request an occupational health assessment when your health may affect your job or be impacted by your work. They may ask for a doctor's report, but they must have your permission to do so. ACAS website (England, Scotland and Wales) explains your rights in these situations. If you are based in Northern Ireland, speak to the Labour Relations Agency for advice.
Many employers offer staff sick pay, so check your contract first. If you are eligible for Statutory Sick Pay (SSP), your employer must pay this amount. Some pay more and this is known as contractual sick pay. Your contract should make it clear how long sick pay can last and if there are any rules.
Eligibility for SSP is explained on the UK government’s website. You can receive it if you are an employee or a qualifying worker. It is not available if you are self-employed. If you are the director of a limited company, you are classed as an employee and you can qualify for SSP if you meet the conditions.
If you are not eligible for Statutory Sick Pay or your SSP is ending, your employer should give you an SSP1 form which you can use to make a claim for social security. You can find more information at GOV.UK (England, Scotland and Wales) or NI Direct (Northern Ireland).
Benefit entitlements will depend on your situation and you can check this using a benefits calculator. You can be an employee, worker or self-employed and still apply for benefits, so it's worth speaking to a benefits adviser. Each benefit will have different eligibility requirements. For example, you cannot receive Employment Support Allowance at the same time as SSPbut can apply for the benefit up to three months before Statutory Sick Pay ends. Some benefits are handled separately in Scotland and Northern Ireland, so do check the claim's process for your region.
To help deal with the consequences a period of sick leave can bring, we recommend that you contact an independent advice organisation for tailored advice. We have also included some useful information below, grouped according to where you live:
Advice organisations for England, Wales and Scotland
Useful organisations
ACAS (Advisory, Conciliation and Arbitration Service): they have a confidential helpline for people that need advice on employment law or workplace advice for employers, employees and workers. You can contact them on 0300 123 1100.
Citizens Advice: gives confidential, impartial advice to help you solve problems you are facing in daily life, including work, financial help and benefits.
Turn2us:anational charity that provides practical help for people struggling financially.
Your local trade union representative (members only).
Labour Relations Agency: helps people in Northern Ireland with employment-related queries. You can call their confidential Workplace Information Service weekdays on 03300 555 300.
AdviceNI: an independent advice network that covers a range of topics including benefits. You can also call their helpline or search their website for local advice contacts.
Turn2us: a national charity that provides practical help for people struggling financially.
When you just want answers, well-meaning advice can feel like it misses the mark. But lifestyle choices and staying active play a huge part in managing MS symptoms. In an ideal world exercising and eating well are really important, but they need to be things you can embrace, your way. Focus on the things that add value to your life – they'll be easier to keep up. Start small, and be kind to yourself.
Exercise is hugely beneficial for managing MS, but when you are struggling with symptoms this can feel a bit overwhelming. It doesn't have to be strenuous exercise, and if your symptoms make you feel unsafe, it is important to speak to your doctor about physiotherapy.
Staying active helps you maintain muscle strength and stamina. Here's a taste of our resources where you will find something for every ability:
You may not have MS, but if you are looking for a reason to cut back or quit smoking, now is as good a time as any.
Studies show that smoking brings significant risks for those with MS including a lower quality of life, faster disease progression and greater disability. The smoke is believed to be particularly harmful in MS and it’s why vapes are best avoided too.
There is also evidence that smokers with clinically isolated syndrome have a higher risk of developing MS than non-smokers.
We have a lot of information on smoking and MS should you want to read up on the topic. We know it’s not an easy habit to kick, but for those with MS the benefits are significant, and it is never too late to stop.
Mindfulness is one technique you may want to explore. It can help you focus on the present moment and reframe intrusive thoughts. It is a meditative practice that can help reduce stress, anxiety and depression. We have various resources available where you can pick up some helpful tips, including this podcast:
