Worried you have MS?
If you’re worried you might have MS, we’ve got information and support to help. It can take time to get a diagnosis and find out if MS is the cause of your symptoms. We explain who you should speak to, how MS is diagnosed, and how to get support while you're waiting for answers.
- Who should I see to get a diagnosis?
- How can I prepare for my doctor’s appointment?
- Why is it taking so long to diagnose MS?
- Help and support while waiting for a diagnosis
- What benefits are there to having an early diagnosis of MS?
Who should I see to get a diagnosis?
If you're worried you might have early symptoms of MS, the first person to see is usually your GP. They might be able to check for other possible causes of your symptoms, which is an important part of diagnosis. GPs can’t diagnose MS – only a neurologist, who specialises in conditions involving the nerves and the nervous system, can do that.
Your GP will ask about your symptoms and carry out an examination of your nervous system. For example, by checking your coordination, balance or reflexes. They might arrange some blood tests. If you're having problems with your eyesight, they may recommend you see an optician.
Your GP might contact a neurologist for advice on symptoms and next steps. They should tell you what the neurologist says.
When to see a neurologist
If your GP suspects you have a neurological condition like MS, they can refer you to a neurologist. They might get advice from a neurologist before that. If your symptoms get treated at hospital you might see a neurologist there.
Suspected cases of MS should be seen by a specialist as soon as possible. But there's a shortage of neurologists in the UK and not all hospitals have neurology departments. So it can sometimes take many weeks to get an appointment. You might be referred more urgently if your symptoms are very disabling.
Our MS Help team is here to provide you with trusted information and emotional support while you’re waiting for a diagnosis.
Find out more about how MS is diagnosed
How can I prepare for my doctor’s appointment?
If you’re preparing for a doctor’s appointment, it helps to have a note of your symptoms and how they affect you, and to think about some questions to ask. That’ll help make the most of your time with them.
It’s often tempting to look for answers online, maybe matching symptoms to a condition and self-diagnosing. But so many things can cause the kind of symptoms seen with MS. And people have different experiences with MS. To find out more about MS and how it’s diagnosed, check reputable information like MS Society or NHS websites. Reliable information has facts based on evidence, and make it clear when things might vary for different people.
Record your symptoms
Keep a diary of your symptoms to take to appointments. Write things down when they happen. It's easy to forget a brief episode or something you think has another cause. The detail could be significant to a doctor. There are symptom tracker apps you can download on your phone or tablet to help record your symptoms.
Providing lots of details can help your doctor make a more accurate diagnosis or a decision to refer you. For example, as well as how the symptoms feel, note how long they last.
Describe symptoms as clearly as possible, using whatever words make sense to you. This makes it easier to get to the root of your problem.
Prepare questions
Before an appointment, you might want to write a list of questions. Ask your most important questions first. And don’t be afraid to ask your doctor outright what they think could be causing your symptoms. This will help start a conversation about what the possible causes are, and the next steps to take.
Questions you might want to ask
- What do you think is wrong?
- What’s the next step?
- Are tests required? Why?
- When and where will they be done?
- What do they involve?
- When will I get the results?
- What might they show?
- What happens if the results are normal?
- Where can I get more information or support?
- Is there anything I can do to help myself?
- Who should I call if I start to feel worse?
Read more on how to handle your doctor's appointments
Don’t be afraid to ask them to repeat anything that’s unclear. They have a duty to make sure you understand.
Make notes you can refer to later. There can be a lot to take in. A partner, family member or friend can be a second set of ears and offer moral support.
Why is it taking so long to diagnose MS?
It often takes many months to get a diagnosis if you have MS-like symptoms. There are often several reasons for this. For example, lots of things cause similar symptoms, so doctors have to consider other conditions as well. And there’s no single test for MS – neurologists need to gather evidence from lots of different tests to make the right diagnosis. All this can take time, even if your referrals to a specialist and for tests happen quickly.
There is support available while you're waiting for a diagnosis.
Help and support while waiting for a diagnosis
You don’t need a ‘label’ to get help. If symptoms are affecting you, you’re entitled to help from health and social care services.
Medical gaslighting
Sometimes people feel they’re being dismissed by doctors, or made to feel they’re wasting time and resources. This might be what’s called ‘medical gaslighting’. Preparing for appointments with notes and questions could help you get the clear answers you need. And it might be useful to keep notes of answers and the next steps agreed in appointments.
Managing your symptoms
There are ways to manage symptoms, whatever their cause. You don’t have to wait for a diagnosis. For example, if you get fatigue, you might find it helps to pace yourself more, and allow yourself time to rest.
Your GP is your gateway to specialist advice and treatment for individual symptoms. Don’t be afraid to ask for help even if you’ve had tests done and you're waiting for results.
Steroids
While you’re waiting for a definite diagnosis, your GP or neurologist might suggest a course of steroids for your symptoms. Steroids reduce inflammation and one reason they’re used is to treat MS relapses. But they can also be used to treat other conditions.
Treatments and therapies before diagnosis
GPs sometimes prescribe stronger painkillers than you could buy yourself, and drug treatments for different symptoms. For instance, anticholinergic drugs can help an overactive bladder.
Your GP can also refer you to experts in specific symptoms, including:
- a physiotherapist to help with mobility and stiffness
- an occupational therapist to offer practical solutions for everyday activities
- a continence adviser for managing bladder and bowel problems
- a speech and language therapist to help with communication or swallowing
Read more about managing symptoms
Your rights at work before diagnosis
If symptoms are affecting your work, you might be wondering if or how to tell your employer.
Even without a diagnosis, you still have certain legal rights to support at work. And if your symptoms are affecting your ability to do your job it's good practice for your employer to make adjustments for you. This could be something like giving you a stool to sit on if you have to stand a lot, or allowing you to work from home on some days.
If you do decide to tell your employer, ask your doctor for a letter to show them. It should clearly say your symptoms are medical problems that are being investigated.
The Advisory, Conciliation and Arbitration Service (ACAS) works with employees and employers. They have information about time off for appointments, sickness and doctors’ notes.
Read the ACAS information about your work rights before diagnosis
Financial help
Your symptoms and their effects are just as real whether you have a diagnosis or not. You might be entitled to financial support from benefits.
For some benefits, the eligibility is based on how symptoms affect you at work or in everyday life. Not on whether you’ve had a definite diagnosis of MS or something else.
For example, you might be able to claim Employment and Support Allowance, Universal Credit or PIP (Personal Independence Payment).
Find out if there are benefits you’re entitled to
Emotional support
It’s hard not to be anxious when you don’t know what's wrong. Diagnosis can be an emotional roller coaster. You can call MS Help on 0808 800 8000 if you want to talk to someone. And there are some things you might try yourself which can help. For example, writing down your feelings, and thinking about what normally calms you down or makes you feel better when you’re worried.
Your GP might refer you to other healthcare professionals to get help with emotional support.
Remember, you're not alone. Other people are in a similar position, even if they've had different symptoms or tests. Your experience, and eventual diagnosis, might not be the same, but they could have useful tips.
And you might find support locally too. Online, our forum can connect you with other people going through the same thing. Sometimes people refer to the uncertain time of diagnosis as ‘limbo land’.
What benefits are there to having an early diagnosis of MS?
Getting an early diagnosis of MS means you know for sure what's causing your symptoms. It could mean you get specific treatments for managing MS.
Early treatment improves long-term health and wellbeing. It slows down the build up of damage and reduces the number of relapses people have.
Within a few weeks of diagnosis an MS nurse or your neurologist should speak with you about treatment options. Lots of people can take a disease modifying therapy (DMT) to reduce relapses and slow how fast disability builds up.
If you’re diagnosed with MS, there's a lot to take in. Our newly diagnosed emails can help you go through it and make sense of living well with MS.
