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Being diagnosed with MS

“I saw the neurologist this afternoon and it’s been confirmed that I have RRMS. I feel strangely relieved. Reading the posts on here and doing my research has really calmed me and made me realise, yes, getting a diagnosis of MS is pants but I will adapt and my life is not over!”

Being diagnosed with multiple sclerosis can flip your world upside down; self-management strategies have a positive effect on your MS and overall health.

Article medically reviewed by Karen Vernon an MS Nursing Specialist at Salford Royal Foundation Trust.

If you’ve recently been diagnosed with Multiple Sclerosis (MS) or are waiting on a diagnosis, our guide will help find the answers to many of the questions you might have, and understand what to do next.

In the video below watch five of our members living with MS, Roxy, Heather, Maytee, Katt and Dave share their multiple sclerosis diagnosis stories and discuss whether it was easy or challenging for them.

How is multiple sclerosis diagnosed?

Multiple sclerosis isn’t easy to diagnose. There isn’t a single, simple test that provides instant results and, very often, other possible conditions need to be tested for, and ruled out, as part of the MS diagnosis journey. As we’ve covered in our guide to MS symptoms, many of the symptoms you experience with multiple sclerosis are also present in other conditions, so there might be a process of elimination. This takes time and, yes, it can get very frustrating.

“I was very pleased how efficient my diagnosis was. The process afterwards to get my symptoms regulated and then onto a DMT went well. Even now, being on my current treatment Ocrevus, the process is streamlined.” @KerryDawn

Although you’ll probably tell your doctor about your symptoms and concerns first, at some stage of the process you’ll be referred to a neurologist for examination and further tests and assessment. 

Getting a multiple sclerosis diagnosis can be achieved in a few different ways, and very often by using a combination of tests and checks. Here’s what to expect.

Assessment by a neurologist
MRI scan
Lumbar puncture
Evoked potential test
Blood tests

Understanding your MS diagnosis

If you’re diagnosed with MS, you might also be told what type of multiple sclerosis you have, though this might come later. There are three main types of MS:

Relapsing remitting MS (RRMS)

This is the most common type of MS at diagnosis. With relapsing remitting MS symptoms appear, sometimes suddenly, and then fully or partially go, so you relapse and then move into the remitting, or the recovery, phase.

Primary progressive MS (PPMS)

With primary progressive MS, symptoms might be similar to those experienced with RRMS but symptoms can remain at the same level for long periods of time instead of coming and going suddenly. Because this type of MS is progressive, the level of disability increases over time.

Secondary progressive MS (SPMS)

You don’t often get diagnosed straight away with secondary progressive MS – it develops after relapsing remitting MS, although not all people with RRMS will go on to develop SPMS. Modern treatments mean fewer people go on to get it, or it takes much longer to develop due to the effect of disease modifying therapies (DMTs) at the RRMS stage. Instead of relapses, symptoms usually remain present and get gradually worse over time. You may hear clinicians talking about other subtypes of MS as more research is undertaken and we understand more about MS.

Dealing with a diagnosis

We know that adjusting to MS and the uncertainty it brings is very challenging. Receiving confirmation that you have multiple sclerosis can be difficult to hear. Some people may struggle with their mental health and acknowledging accepting a new reality, while others feel an odd relief after the confusion that sporadic symptoms bring.

You will have a lot of questions, and many more might come to mind in the days and weeks after diagnosis. Your consultant, neurologist, or specialist – whoever discloses your diagnosis – will answer as many as possible, though the need for follow-up support and advice is inevitable. You can get that from medical professionals as you take the first steps into treatment, and through the supportive online community here at Shift.ms, with thousands of people who get what you’re going through. In the UK specialist MS nurses are often an essential part of an MSer’s healthcare team but wherever you are in the world, ask your doctor and others living with MS what help is available to you.

“I was lucky to have a fantastic neurologist… he had a suspicion but said nothing until he could get me to have a lumbar puncture. It took time to build my trust in him but he was very patient and went at my pace… when the diagnosis was confirmed he didn’t just tell me and shuffle me out the door. He sat and talked to me about it and made sure I was OK and understood everything he said.” @Dolphino26

Of course, after a diagnosis for MS, you might just want to get out of the consultation room and speak to a loved one as soon as you can. It’s important that you talk to someone and share how you’re feeling if you can.

“The first thing I did when I left the busy ward and got outside was call my Mum. I don’t think either of us understood then how life-changing and serious this was – but she was there for me as much as she could be and we planned to work it out together.” @sarahemily

In many ways, being diagnosed with multiple sclerosis enables you to take the first steps to move ahead with your life and start getting the treatment you need to manage the condition.

“It’s quite a change being able to accept my symptoms instead of feeling embarrassed of them and needing to hide them. Validating but sad.” @Joyfulmaryjane

How will my life change?

Inevitably, after a diagnosis of multiple sclerosis, you’ll have concerns about the future. These may include:

  • Will I end up in a wheelchair?
  • Will I be able to have children?
  • Will this kill me?
  • Is there a cure?

Asking lots of questions might deliver some difficult truths or identify that you may have been worrying about something that might never happen, either way it will banish the uncertainty. You’ll want to ask them, but make sure you pace yourself – there’s lots to absorb and all the answers you read might not apply to you moving forward.

Remember, everyone’s multiple sclerosis story will be different, and so how you live with MS could be different to how someone else does.

Your family, partner and friends can listen to you as much as you need, but when it gets down to it they don’t understand what living with MS is like. You feel like a burden and a downer constantly complaining about your symptoms, pain and fatigue. Asking them questions you or them can’t understand. You need to speak to someone who knows exactly what you’re going through - and that’s why Shift.ms is so great. @sarahemily

The next steps after MS diagnosis

After being diagnosed with multiple sclerosis, the next steps will be to discuss your eligibility for treatment. We know there’s currently no cure for MS, but it can often be treated to allow you to live as normal a life as possible. If you are eligible for a disease modifying therapy (DMT), the sooner you begin one the better your long term health outcomes will look.

There are a range of different treatments and therapies available for MS. We look at MS treatment options in more detail here. Your neurologist or MS specialist should discuss these with you, as soon after diagnosis as possible – these might have been explained to you on diagnosis. Many people are eligible for DMTs but not everyone – for example primary progressive MS has limited treatment options – so it’s essential that you discuss your options with your doctor. If you are eligible for a DMT, it’s best to start treatment early, even though the prospect can feel daunting.

Once I was officially diagnosed, my specialist asked what I wanted to do. I told him I saw no reason to wait when I could start treatments right away, and so we did. My advice to you is to make an appointment with your neuro forthwith to discuss therapies and pick one that suits you best. @SteveB82

As well as medication, there are other things you can do following a diagnosis for multiple sclerosis. This includes reading up on MS, to gain more of an understanding about what it is and what to expect – if you haven’t done so already – and seeking counselling and support to look after your mental health. Symptom management is an important aspect of MS care whether you’re on a treatment or not. Medication, exercise and activity (both physical and psychological), and diet are all important components of managing your MS. 

Following a multiple sclerosis diagnosis, and throughout your journey with MS, support is vital. Our members are living with MS every day, and can give you support, friendship and advice every step of the way.

Join the Shift.ms community today – it’s completely free – to start sharing and finding help.

Sources:

https://www.nhs.uk/conditions/multiple-sclerosis/diagnosis/

https://www.mssociety.org.uk/care-and-support/newly-diagnosed

https://mstrust.org.uk/information-support/newly-diagnosed

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274