Amy’s story

My diagnosis  

My path to diagnosis was complicated, as it is for many people with MS. In 2011, I woke up and could not feel the cold brass doorknob when I opened my bedroom door. My hand was numb, yet the cold caused pain. In the shower, I could not properly feel the water on the left side of my upper body, from my nose to my navel and across my chest and arm, although it was painful.  

I am a GP, and my immediate thought was, ‘Oh God, you have MS.’ I contacted my own GP and was referred to neurology. By the time I saw a senior registrar, the symptoms, which had lasted around three days, had resolved. I felt that they were dismissed. I was due to get married the following month and wanted an MRI, although the registrar tried to dissuade me by warning that it could reveal something else I might not want to know about.  

The scan showed two lesions, but I was told that the findings did not meet the diagnostic criteria for MS at the time. After my honeymoon, a neurologist told me there was a 50% chance the symptoms would recur and that I should get back in touch if anything else happened. For a while, I panicked. I imagined the wheelchair I might need and wondered whether every small sensation meant MS. Gradually, I put it out of my mind.  

In February 2024, I developed a strange shooting discomfort. It travelled from my forearm to my middle finger and then towards the corner of my mouth. It began a few times a day but quickly increased to hundreds of episodes, including during the night. Although it did not sound typical of MS, something kept nagging at me, so I contacted my GP and asked to be referred for another scan.  

Two months later, I had the MRI. After another month without a result, I contacted the neurologist directly. He replied immediately and told me the scan had not yet been formally reported but appeared to show multiple lesions. I was referred to the MS clinic, received a provisional diagnosis in June and had it confirmed in September 2024.  

Looking back, I believe I had experienced several relapses from around 2018 onwards, with many symptoms becoming worse after I developed long Covid in 2020. By the time the diagnosis was confirmed, I had already done much of the catastrophising years earlier. I still sometimes worry about the future, but I also know that treatment has moved forward considerably since 2011.  

What helped me  

In September 2024, I attended the British Society of Lifestyle Medicine conference and met Dr Jonathan White at the Overcoming MS stand. I told him about my diagnosis, and we had a great conversation about the charity and its approach.  

I was initially sceptical about changing my diet so radically, but I was curious about the different recommendation and the idea of supported self-management. When I got home, I looked into Overcoming MS in more detail. Peer support particularly interested me, so I contacted the Sheffield Circle leader and began going to the monthly coffee meetings. Peer support is vital when you are living through a chronic condition or major life event. I recommend it to everyone.  

I began by giving up dairy and red meat. After attending the Overcoming MS Living Well Live  event online, I embraced the diet more fully. I joined the Pathways course, attended the Ammerdown retreat and began training as a facilitator. I have now almost through my training.  

Exercise also helps me feel that I am caring for myself. I lift weights, walk when I can and try to move regularly. Meditation and stress management have been harder to establish, but I continue to work on them without expecting every change to happen at the same pace.  

What changed  

Finding Overcoming MS has been overwhelmingly positive. Following the recommendation has given me a sense of agency and made me feel far more hopeful about living with MS.  

I have made friends with other people living with MS whom I expect to know for life. By sharing our experiences, we help one another in small ways every day. That connection has changed how I see my diagnosis and the future.  

I have also begun to redirect my professional experience. I have spent much of my career advocating for patients. Now I am learning to advocate for myself and to help other people do the same. Training as an Overcoming MS facilitator brings together my medical experience and my personal understanding of MS in a way that feels purposeful.  

What still is not easy  

Medication has been difficult for me. Side effects aggravated other health problems, and I was off work for five months, which was extremely stressful. I am still considering what I want to do about medication in the future. Looking after myself through exercise, movement, food and rest helps me feel less frightened while I work through those decisions with my healthcare team.  

Fatigue is one of the hardest symptoms. It has changed how I work and means I can no longer manage full days of clinical medicine. I also live with dizziness every day. Because MS can be invisible and I do not complain very often, people may not realise what I am dealing with. I am learning to say more clearly when I am struggling, even though that does not come naturally to me.  

I worry that my children may have a higher risk of developing MS. I make sure they take vitamin D and we have gentle, age-appropriate conversations about healthy habits. I try to focus on giving them useful information without allowing fear to dominate family life.  

Life today  

I have had to slow down at work, and losing some of my clinical practice has been genuinely sad. At the same time, I am enjoying developing other roles and building a varied portfolio career that I hope will remain manageable.  

I am looking forward to qualifying as an Overcoming MS facilitator. I believe that combining my medical knowledge with my lived experience gives me a valuable perspective from which to support others.  

My life now includes daily symptoms and necessary adjustments, but it also contains friendship, purpose and the confidence to advocate for what I need.  

What I wish I had known… that MS did not have to control me.  

 I wish I had known that I could learn to live well with MS, make choices that gave me a sense of agency and find people who understood.