Worried you have MS?

Concerned your symptoms may be MS? Perhaps you feel at risk because someone in your family has multiple sclerosis? Or the internet flagged MS as a possibility? Here you’ll find information on common early symptoms, the first steps towards diagnosis, and ideas to help manage some of your fears.

It may help to keep these in mind:

• an MS diagnosis can take time
• there are many other conditions with similar symptoms
• you may not have MS
• but if you do, there are a choice of treatments and many different ways to manage your symptoms 
• we are a UK charity that supports those worried or affected by MS and we are just a phone call or email away.

There is no simple answer to this question. Symptoms that appear in MS can just as easily be found in other conditions too. This is because MS symptoms are not unique. Try to keep this in mind as you read on because the information below only focuses on multiple sclerosis. 

MS has a broad range of general symptoms, but most people only experience a small number at the time of diagnosis. It's also unlikely that someone will experience every MS symptom over their lifetime. 

Some common early signs may include: 

• fatigue - an inexplicable mental and physical exhaustion that bears no relation to what you're doing 
• stumbling more than before
• unusual feelings in the skin such as pins and needles or numbness
• slowed thinking
• problems with eyesight.

There are other symptoms of MS, but these are less common at this early stage.

To get a sense of what some first symptoms can feel like, we have clips of real-life experiences. 

Talk to your GP in the first instance. Your doctor will likely carry out some initial tests to try and gauge what is going on. They can't diagnose MS, but they can refer you to a neurologist who can. There is no definitive test for MS and its diagnosis takes into account your various symptoms, MRI scan and lab results, while ruling out other explanations. This can take some time.

NICE's (National Institute for Health and Care Excellence) guideline for diagnosing multiple sclerosis in adults recommends doctors:

• take a medical history
• carry out a physical examination  
• rule out other potential causes – this may involve taking some blood samples and other tests
• consider NICE's guideline on suspected neurological conditions: recognition and referral.

If your GP can't rule MS out, they will refer you to a neurologist. However, if your symptoms are not felt to be brain or nervous system-related, then they may refer you to a different specialist for further investigation.

A 10-minute doctor's appointment can feel rushed when explaining your symptoms, so a bit of preparation really helps to get the most out of this limited time. 

Here are some ideas you may want to try before your appointment: 

Start a symptom diary

Noting down details of your symptoms helps to build up a picture of how they affect you over time.

You could begin by logging: 

• individual symptoms 
• when did they start?  
• do they fluctuate during the day?
• do they come and go or are they more persistent?
• on a scale ‘one’ for good days, ‘five’ for bad, how severe are your symptoms?  
• do they affect everyday activities?
• is there anything that makes them better or worse?
• are there any symptoms in your past that with hindsight could be related? You can find a list of the many and varied MS symptoms here.

Create a one-page summary

It can be difficult to get across how your symptoms are affecting you in a short doctor's appointment. Sometimes it's a bit overwhelming, especially if you have a lot of different symptoms to share. Bringing along a one-page summary of your diary can make this a lot easier. A list or table format can work well when organising your symptoms in date order. 

Having this summary with you in the appointment gives you a useful prompt. You can also choose to give a copy to your doctor, so they get a clearer, faster understanding of your health. 

Include other important medical information

Your doctor will also want to know about:  

• any other health conditions
• any medication you are taking - both prescribed and over the counter
• any medical conditions affecting others in your family including MS.

If you are worried your symptoms are MS-related, any delay in seeing a neurologist can feel deeply frustrating. 

From your GP's point of view, assessing whether your symptoms are due to MS or another condition can be challenging and take time. They will use their clinical experience to rule out what they can before making a specialist referral. They may also suspect something else is causing your symptoms, which may not require a neurologist's diagnosis.

If, however, you're left feeling uneasy about the approach for diagnosing your symptoms, we have some suggestions below that may help where relevant:   

Being treated for something else

Our helpline often hears from people being treated for another condition when they are really anxious about MS. Your doctor will have considered their reasons for this decision, but it doesn't stop you asking:

• what effect is the treatment likely to have?
• when can I expect an improvement? 
• when can I have a treatment review?

Any treatment review should allow enough time for the treatment to work. If by then, it's not making a difference, ask your doctor about alternatives or whether it's time to reassess the diagnosis. 

Symptom comparison

If you feel you may have MS, but your doctor has suggested a different diagnosis, it can help to write down your own symptoms. Separate these into two columns: 

1. symptoms that match those found in the condition diagnosed by your doctor
2. symptoms that are not common in the diagnosed condition.

Talk to your GP about any symptoms that don't really fit this particular diagnosis.

New or worsening symptoms?

If you experience new symptoms or existing ones get worse, do speak to your GP. Diagnosis can be challenging, so every new piece of information will help shape your doctor's response.

Second opinion?

If you feel like you have got to the point where you still disagree, it is reasonable to ask your doctor for a referral for a second opinion from another GP or specialist. Doctors also ask colleagues for second opinions, so do not feel bad for asking for this. 

The fear of the unknown and the long wait for answers can really raise your anxiety levels. Knowing what to expect from the diagnostic journey can help with this, so we have listed some questions you may want to ask your health professionals. These should help you get a better understanding of your situation and how it's going:  

• What are the next steps? – it's useful to ask this at every appointment
• Are any other tests needed, and if so how long will I need to wait?
• When and how will I receive my test results?
• Can you arrange for me to be copied into letters to and from the consultant?
• Can you explain that again (if something is unclear)
• You can also ask your GP for referral to get a second opinion if you feel unhappy with the way the diagnosis process is being handled. Although this isn't a legal right, a request is usually accepted. 

You may feel stressed or run down from living with unexplained symptoms. If so, talk to your GP about whether you can be referred to a counsellor. They can help you find ways to cope with the uncertainty.

It is possible that some symptoms can be treated before a diagnosis is confirmed. Talk to your GP about what can be done now to help manage your symptoms. You may need a referral for pain management, continence services, psychological support or physiotherapy to list a few examples.

Sometimes it's a question of watching and waiting to see how symptoms develop, allowing doctors to distinguish MS from the other possibilities. This can be very frustrating and worrying but it is quite a common experience.

If your health professionals are unable to give you a diagnosis at the moment, it is useful to agree a plan of action with them. This may include arranging a follow-up appointment in six to 12 months time. Or sooner if you develop significant new symptoms or your current symptoms worsen, but make sure you know who to contact if this happens.

It will be your responsibility to keep pushing for a diagnosis while acknowledging that this is not always straightforward and can take time. 

• Listen to our Worried you have MS? podcast where we talk to Daniel Matterson, an NHS doctor who has MS.
• NICE 2022 guidelines for multiple sclerosis in adults: management
• NICE guidelines for suspected neurological conditions – 2019 guidance for GPs to help identify people who might have an neurological condition