Living with Multiple Sclerosis

Last month was MS Awareness Week, focusing on the experience of living with Multiple Sclerosis, from symptoms to their impact on daily life. Here, our Chief People and Culture Officer, Liz, shares her experience of living with MS.

I thought I would write a little post to share with you about my recent diagnosis and my journey so far.

For those of you who don’t know me well, I’m a 45-year-old full time working mum, with eight year old twin boys, and I have always led a busy and very full-on life, both in and out of work. I’m caring and empathetic and always put others first, but if I’m honest I’d never really focussed on looking after myself.

My MS symptoms

One day in early July 2022 I lost the sight in my right eye. At first I assumed I had an eye infection but after visits to various optical specialists I was referred to a neurologist. After a couple of weeks of medical tests including an MRI and a Visual Evoked Potentials examination (involving wires into your eyeballs to test how long it takes your brain to respond to messages being sent) I was told that I had optic neuritis and was put on a course of steroids. I was monitored closely and I regained some sight, although sadly it will never come back fully.

I visited the neurologist again in early September (I remember it well as it was the day the Queen sadly passed away). He suggested a follow up MRI (just to make sure the inflammation in the optic nerve had subsided), but he seemed very positive that this was an isolated incident. The MRI was scheduled for the following Tuesday and I spent a whopping two hours inside the metal tube.

The following day I began to feel unwell, with severe pins and needles and numbness creeping from my feet to my calves. I naively assumed it was a reaction to the contrast dye and carried on with my day. The following day, trying to walk from Farringdon station to the office I realised that the pins and needles had spread from my toes to my hips, so I called the clinic to let them know that I had experienced a reaction to the contrast dye. I was transferred to the radiographer who had carried out the scan. They advised me to attend A&E immediately.

Fortunately, I bumped into a kind colleague at the door of the building, who flagged down a black cab for me and I spent the rest of the day in UCLH A&E. Unbeknown to me at that time it would be 119 long days before I would set foot in the office again!

Being diagnosed with MS

At UCLH I was referred from consultant to consultant and had very invasive tests. My panic levels were rising at this point, and I was sent home with no answers, just more steroids and advised to have complete bed rest before seeing my consultant again on Tuesday for the MRI results.

Things took a turn however, and over the next couple of days, I became paralysed and unable to walk. My face and tongue became numb and I experienced severe spasms throughout my chest.

I was admitted to hospital for intravenous steroids and I stayed there for a week. After a lumbar puncture and a further MRI, which showed 18 lesions on my brain and a large lesion on my spine, I was diagnosed with Multiple Sclerosis (MS). When I heard the words it floored me. I had no idea initially what this meant or how my life would have to change.

I’m ashamed to say that until that point I had no real knowledge or experience of the disease and initially had negative visions of walking sticks, wheelchairs and immobility. Once I had overcome the shock and emotion of my diagnosis I began to do more research.

Learning about Multiple Sclerosis

Multiple Sclerosis is a chronic and incurable disease that affects the body’s central nervous system and causes the body’s immune system to attack myelin, a coating that insulates the nerve fibres (rather like the plastic insulating sheath that covers the three wires that lead into a plug).

Once the myelin is damaged or destroyed, it affects the nerve impulses travelling to and from the brain and spinal cord. This can cause many life-changing symptoms, including:

• Extreme fatigue
• Numbness
• Tingling
• Pain
• Tremors
• Slurred speech
• Loss of balance and muscle coordination
• Visual disturbance
• Muscle weakness

It is three times more common in women than men and many MS patients are diagnosed between the ages of 20 and 40.

Reacting to my MS diagnosis

My initial relapse lasted for four months, and I also experienced two further relapses during this time. I was sent home from hospital feeling as unwell, if not worse than when I was admitted, which in itself felt very overwhelming and scary. I was told to ‘take each day as it comes’ and ‘rest as much as possible’.

For me that was the most frustrating thing to hear as I’m not by nature someone who can sit still and do nothing. However, during those early days I was physically unable to do very much at all, and had no choice but to heed to the advice I had been given.

I was in a wheelchair for seven weeks, but I’m pleased to say that following a period of intense physiotherapy I am now able to walk again - and more recently without the use of a stick, which has given me huge hope.

I am very fortunate that I had excellent medical treatment and the severity of my initial episode meant that I was fast-tracked onto a treatment plan which involves a monthly infusion of a drug called Tysabri at St George’s in Tooting. This drug helps to prevent my immune system from attacking my central nervous system, in addition to the daily cocktail of neuropathic pain relief which I now also take.

Finding support for life with MS

Once I felt able to, I began to trawl through the information leaflets that I had been given by the hospital, and I was introduced to a dedicated MS nursing team who will support me throughout my journey. In addition to the medical support, I also began to look into other ways I could help myself manage my condition.

By chance one day I stumbled across a charity called Overcoming MS, founded in Australia by Professor George Jelinek, and I immediately ordered his book. I’m not going to lie, it's a heavy read and two months on I’m still ploughing my way through it! At the heart of his message is that although there is currently no cure, people living with MS can live well by making informed lifestyle choices around things such as diet, vitamins, meditation, exercise and through support groups in addition to medication.

Encouraged by what I read, I signed up to do an online course with the charity and have learned so much over the last few weeks. It has been really inspiring, and chatting to others living with MS has helped me to turn a big corner mentally.

While there is currently no cure, I do have hope for a brighter, healthier future. I have accepted my condition but I sure as hell won't let it define me. I thought a lot about how I could use the hashtag for this years’ awareness week:

"#MSMakesMe feel stronger than I have done in a long time, and determined to do everything that I can to live my life in the best way that I can. It may mean that I get tired very easily, and some days my mobility is impaired more than others. I may never regain the feeling in my hands, but it does mean that I’m much more grateful and appreciative of the little things in life and that can only be a good thing."