Beyond the Diagnosis

Multiple Sclerosis (MS) is a lifelong neurological condition where a person’s own immune system attacks its myelin (the protective fat and protein coating nerve cells). This attack causes inflammation and can leave lesions (scars) on that myelin, and eventually even the nerve fibres themselves. But why is this an issue?

The key idea is that if myelin is damaged, it can slow down or block electrical impulses travelling between the brain and the rest of the body. This can lead to weakness, known as paresis, incoordination, slower reaction times and feeling extreme fatigue. Other symptoms of MS can be blurred vision, muscle stiffness and numbness in different parts of the body.

It is not yet confirmed what exactly causes MS but it is most commonly diagnosed between ages 20-50 and is more common in women than men. Smoking has also been linked to increased risk. Unfortunately, it does not yet have a cure but treatment options are available to help patients manage it better such as steroid medication in relapses to reduce nerve swelling or muscle relaxants to aid muscle spasms.

There are 3 typical types of MS: relapse remitting, secondary progressive and primary progressive. With relapse remitting MS, the patient experiences ‘relapses’ or ‘episodes’ of symptoms which then get better (remission). This often develops into secondary progressive MS, which means the patient consistently experiences symptoms, gradually getting worse. The least common type of MS, primary progressive, means whilst experiencing symptoms consistently, there are no periods of remission. 

MS is a condition that intrudes on the daily life of those who experience it. But to what extent are they affected? Well, there’s a spectrum of the outcomes of a patient with MS. Some may experience more severe symptoms, thus needing to use mobility aids and in advanced cases, may unfortunately lead to partial or complete paralysis. But others may experience more moderate symptoms meaning MS only has a small impact on their lives.

We were intrigued on the actual day-to-day with someone that suffers with MS and their experience with healthcare professionals helping to treat them. So we spoke to someone that has been managing MS for 7 years, who we’ll refer to as J.

In 2018, J experienced vision loss in one eye and upon being referred to Moorfields (a specialist eye hospital), she was diagnosed with optic neuritis, the inflammation of the optic nerve. She was informed that this is a possible symptom of MS and was given the option of having an MRI if she was also experiencing other symptoms: legs feeling weighted down, numbness and extreme fatigue. She had an MRI a month later and was ultimately diagnosed with Multiple Sclerosis. At the time of diagnosis, she felt a ringing in her ear as she completely zoned out of her consultation due to both her shock and worry. Fortunately, her doctor noticed and empathised with her, reassuring that MS can be managed.

Following her diagnosis, her life changed in some subtle and some more significant ways. At the beginning, J would experience panic attacks when her vision would distort or blur as she found MS was beginning to change what she could or couldn’t do. But she remained tenacious in still living her life as much as she could whilst being a mother. Eventually, J learnt that pacing herself in the day and allowing regular periods of rest was best to stop fatigue or numbness from accelerating. 

A common treatment of MS is the disease-modifying therapy (DMT): natalizumab, or known as the branded name ‘Tysabri’. It is an IV infusion where a monoclonal antibody blocks specific immune cells e.g. lymphocytes from crossing the blood-brain barrier and attacking the myelin in the brain and spinal cord. It aims to reduce relapse frequency and has proven to slow the progression of MS. J received this every 4 weeks which then changed to every 6 weeks, taking 2 hours each treatment. After each dose, she would often find herself completely exhausted and having to sleep the remainder of the day. However 6 months ago, the JC (John Cunningham) virus was found dormant in her blood. Whilst this is relatively common and harmless, certain MS treatments, such as natalizumab, pose the risk of reactivating the virus and causing a severe brain condition. As a result, she was offered to take a newer DMT: ublituximab. Similar to natalizumab it is a monoclonal antibody but it targets a protein found on B-cells (a type of immune cell) which is called CD20 to reduce the immune attack on myelin. She now has the new infusion every 6 months but taking the entire day each time. 

Curious on how healthcare professionals relay this information to a patient, we asked how much choice she had in her treatment. J relayed that each MS patient under the NHS has their own MS nurse to call with any concerns, questions or worries, making information accessible. She was able to discuss options for different treatments with her consultant to construct a tailored healthcare plan for her, but sees them at least once a year. J said whilst the consultant focuses more on the medical aspect of MS, her MS nurse understands her plight in detail, not just how she manages MS medically but also how she lives her life with it.

Despite her comfortable relationship with the healthcare professionals involved in her treatment, she wishes that upon diagnosis there is a greater emphasis on explaining what MS actually is rather than having to put the pieces together herself. She thinks a thoughtful first consultation starts with encouragement with the information slowly broken down instead of the over-use of scientific language immediately, which is why we are dedicated to breaking down medical concepts into everyday language. 

Our aim for writing this post is to raise awareness of MS as it’s often an invisible condition. J wishes that there was more representation of those that lead a relatively normal life with MS, rather than only seeing the worst-case scenarios to provide hope to those diagnosed. 

MS looks different for everyone and J’s story is a reminder that you can live a life beyond a diagnosis and adapt to change. Her hope, and ours, is that stories like hers are valued as much as the harder ones.