Roxy's journey to diagnosis


15 May 2022

Roxy

Roxy Murray was diagnosed with multiple sclerosis at the age of 26, but her road to diagnosis started around eight years before. Here, Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that other ethnically diverse individuals don't face the same difficulties and delays.

At the age of 18 I woke up one morning with double vision and blindness in my right eye. I was immediately rushed to the eye hospital who told me I had optic neuritis, papilledema (swelling of the optic disc or part of the optic nerve) and a possible brain tumour.

I was extremely scared and frightened. I was transferred to another hospital where they gave me steroid IVs and a lumbar puncture for my papilledema. However they still didn't know what was causing my issues. Eventually, a team of doctors and neurologists decided that I had antiphospholipid syndrome, benign intracranial hypertension and systemic Lupus erythematosus.

In the years that followed I would experience intense headaches, foot drop, anxiety and depression but generally had a normal life trying to attend fashion university and even had a part-time job. It was 2013 when my symptoms started to get worse. I had hot flushes, tingling and pins and needles in my joints as well as general unwellness. My anxiety increased and I started to battle depression.

One day at work I couldn't lift my right arm above my head. It felt heavy and hypersensitive with intense feelings of pins and needles. I couldn't write or perform normal tasks with my hands. My arm continued to lock up and felt tense but also hot to the touch. Luckily, my manager insisted that I go straight to the hospital.

I went through the same series of tests that I'd had years before but this time the results pointed to relapsing remitting multiple sclerosis.

Upon arrival, the doctors thought I'd had a stroke and immediately gave me an MRI. This showed four short segment lesions on my spinal cord. They then decided to give me a lumbar puncture which came back positive a few weeks later.

As this wasn't my regular hospital the doctors decided to re-evaluate my previous diagnosis of Lupus. I went through the same series of tests that I'd had years before but this time the results pointed to relapsing remitting multiple sclerosis. I was supplied with a letter outlining the new findings and handed back to my usual hospital who unfortunately were not convinced by my diagnosis of MS. Instead of getting the treatment the consultant neurologist had requested, my old neurologist put off treatment.

What I wasn't prepared for was being told that there was no cure for MS and that my world was about to change.

In this time my symptoms persisted and started affecting things like my brain and cognitive function, balance and day-to-day living. Over a year later, my neurologist decided to consider the possibility of MS. He repeated the MRI and gave me a gamma scan and a PET scan (to rule out other conditions such as a tumour). The results showed new lesions in my brain and spinal cord.

Although I was scared, I was extremely happy to finally have a concrete diagnosis. What I wasn't prepared for was being told that there was no cure for MS and that my world was about to change. Sitting in the room being presented with numerous disease modifying drugs (DMD) options made me feel overwhelmed. I was struggling to accept the news and to share my diagnosis with people around me.

The side effects of every DMD scared me but after a lot of deliberation, I decided to try a drug called Tysabri. I had three infusions before having a reaction to the treatment and immediately had to stop. With the misdiagnosis, adverse reaction and overwhelming information I decided to take a step back, allowing myself time to research more about MS and the various treatments.

Reflecting on my journey, it's hard not to feel like I was misdiagnosed at first because of the colour of my skin.

During that time, I changed how I treated myself. I stopped smoking and started exercising. I started practising yoga and looked into how to improve what I was eating. Feeling stronger and more informed, I returned to my neurologist and was presented with a decision between two drugs, Ocrevus and Lemtrada. I decided to go with Ocrevus and haven't looked back. Although I've only had two infusions so far, it's definitely helping my symptoms and allowing me to live a more fulfilling, healthy lifestyle.

Of course there's a lot more to my story and there have been ups and downs along the way. Reflecting on my journey, it's hard not to feel like I was misdiagnosed at first because of the colour of my skin. MS is seen as a more Caucasian disease while Lupus is something thought to affect more ethnically diverse individuals. I feel that my treatment, progression and overall health journey was compromised because of these misconceptions but by speaking about my experiences I'm hoping to prevent the same thing from happening to others. By sharing my story, I hope that it will allow us to be treated better, helping to speed up diagnosis and increase our visibility within the MS community.