Halfway through her senior year of college, Roxy Murray experienced a terrifying morning: she awoke to find she was blind in one eye and seeing double with the other.

Panicked, the 18-year-old hurried to the hospital, where doctors discovered swelling in her brain. To alleviate the pressure, they immediately started her on a steroid regimen.

‘Up until that point, I had never faced any significant health issues—I had never been hospitalized or seriously ill,’ recalls Roxy, who is now 37.

After conducting a series of tests, doctors diagnosed the young woman with lupus, a chronic autoimmune condition that can, in unusual cases, lead to increased pressure in the skull. They prescribed potent medication, assuring her it would address the issue. However, that initial emergency room visit was just the beginning of many, eventually leading to an eight-year journey before Roxy was diagnosed with multiple sclerosis (MS).

MS is a long-term neurological disorder that affects over 130,000 individuals in the UK, typically appearing in people in their 20s and 30s. It occurs when the immune system mistakenly attacks the myelin, the protective sheath surrounding the body’s nerves, causing damage to the brain and spinal cord.

The symptoms of MS can include visual disturbances, muscle weakness, numbness, and fatigue. Early intervention with immune-suppressing drugs is crucial to slow or prevent the disease’s advancement. Without treatment, MS can lead to paralysis, loss of sight, bladder control issues, and an increased susceptibility to life-threatening infections.

The majority of patients have a form of the disease known as relapsing-remitting MS, where the symptoms come and go.

This can eventually become secondary progressive MS, where symptoms steadily worsen over time.

Doctors thought Roxy Murray had lupus, but eight years later she was diagnosed with multiple sclerosis

About a tenth of patients have an aggressive form called primary progressive MS, where symptoms gradually get worse with no periods of remission.

MS is also nearly three times more common in women.

But for many, it can take years to get a diagnosis. In fact, studies show that MS patients commonly endure symptoms for as long as ten years before finding out what is wrong with them.

In Roxy’s case, it took nearly a decade in and out of hospital, including multiple emergency visits after passing out. This could happen to her anywhere – at home, on the train and even in the middle of the street. It meant that even early on, Roxy felt she didn’t just have lupus.

‘I knew others with the condition and my symptoms were so different,’ says Roxy. ‘But I was young and overwhelmed by the whole situation, so I trusted what I was being told by medical professionals.’

It was only when, aged 26, Roxy found that she couldn’t raise her arm over her head to stack a shelf at work, that doctors began to explore the possibility of MS.

Once again in A&E, Roxy explained to a neurologist about her debilitating headaches, nausea and sudden fainting spells. She was given an MRI scan of her brain and spinal cord, and fluid was taken from around her spine for analysis. Then she was officially diagnosed with MS.

‘I had never heard of it before,’ says Roxy. ‘But I was happy to have something that explained what I was going through.’

Now, having spent the past decade on medication that dampens down her immune system, stopping further damage to her nervous system, Roxy says her headaches have abated and she hasn’t passed out in years.

She has also made changes to her lifestyle – including quitting smoking, losing weight and eating more healthily.

‘Since starting medication, my MS has been stable.

‘But those eight years of being treated for lupus caused permanent changes to my mobility,’ says Roxy, who now regularly uses a walking stick.

Roxy now regularly uses a walking stick, as the eight years of being treated for lupus caused permanent changes to her mobility

Experts say cases like Roxy’s are so common because NHS doctors fail to recognise the symptoms of MS.

‘They tend to come and go, lasting for a few days or weeks and then fading into nothing,’ says Dr Ruth Dobson, professor of clinical neurology at Queen Mary University of London. ‘This, combined with the fact that there can be years between MS attacks, and that many symptoms – such as fatigue – are not hugely specific to the condition, can mean it takes longer for doctors to put the pieces together.’

Experts say that, in recent years, there has been an improved understanding of MS.

In 2022, landmark research concluded that, in many cases, MS can be triggered by the Epstein-Barr virus, which causes the common childhood illness glandular fever.

There are also a growing number of medications that can slow the progression of MS. These drugs, known as disease-­modifying therapies, protect the nerves from being attacked by the immune system.

However, these drugs work best when patients are treated early on in their ­disease – meaning delays to diagnosis can be life-changing.

‘Doctors need to be more aware of the symptoms of this condition,’ says Roxy. ‘And patients should read up on the signs too, so they can advocate for themselves.’

The easy-to-miss symptoms of MS 

According to the MS Society, symptoms of the condition can come and go and change over time, ranging from mild to severe.

While they vary from person to person, the charity advises that anyone who experiences the following symptoms should ask their GP to look into the cause:

• Fatigue
• Numbness and tingling 
• Loss of balance and dizziness 
• Stiffness or spasms 
• Tremor 
• Pain 
• Bladder and bowel problems 
• Vision problems 
• Problems with memory and thinking