‘It was like a light at the end of the tunnel’ Marilyn tells her story of Transverse Myelitis

In 2015, Marilyn Polak started getting a bad back that wouldn’t go away. Her GP referred her to a neurosurgeon fearing she had a slipped disc, but what was actually going on was far more complicated.

Marilyn has Transverse Myelitis, which is quite often related to the condition known as Neuromyelitis Optica Spectrum Disorder (NMOSD). In both of these rare conditions, certain areas of the central nervous system become inflamed. In Marilyn’s case, it was her spinal cord.

“When I was getting tests in Manchester to figure out what was going on, my hands and feet started to go numb and my back was still painful” Marilyn said “I was on steroids to bring any inflammation down, but they still couldn’t tell me what was wrong.”

After numerous tests, clinicians couldn’t narrow down the condition and the best course of treatment for the 72 year old. Whilst being seen by specialists in Multiple Sclerosis, Marilyn’s daughter found the NMOSD service, run by The Walton Centre in Liverpool, where her condition of Transverse Myelitis was confirmed.

Marilyn said: “I asked if I could be referred and they said absolutely, as they were very familiar with the types of symptoms I’d been going through. When I first started using the service it was like a light at the end of the tunnel. They just knew what I was experiencing, and, more importantly, how to support and treat my condition. At one point it felt like I was standing in a cold stream all the time! But they knew how to help.”

The NMOSD service at The Walton Centre consists of a dedicated multidisciplinary team, providing a specialist service. This includes consultant neurologists, nurse specialists, an orthoptist, physiotherapist, occupational therapist, dietician, psychologist and volunteer patient liaison.

NMOSD Nurse Specialist Samantha Linaker said: “Being diagnosed with a condition such as Transverse Myelitis and/or NMOSD can be quite stressful. Often patients come to us having been misdiagnosed or undiagnosed for many years. Fortunately, we have an excellent multidisciplinary team approach so that we are able to address the various effects of this condition on an individual basis. Our specialised service enables us to assess patients quickly, treat symptoms, prevent possible relapses and offer education and support. We all feel very privileged to be part of such unique service.”

As well as treatment, the NMOSD service provides regular webinars, giving patients advice on a range of potential issues, including COVID-19, fatigue and other ways to get support.

“The sessions are excellent,” Marilyn continued “Dr Huda and the team have been very supportive during the pandemic, and since taking the group meetings online, we’ve been able to attend from the comfort of our own homes. You can’t underestimate how valuable hearing other people’s experiences are, it makes you feel like you’re not alone.”

The Walton Centre is one of two centres in the UK which specialises in NMOSD, alongside the John Radcliffe Hospital in Oxford. According to the Transverse Myelitis Society, there are approximately 300 new cases a year, common in ages 10-19 years and 30-39 years. For more information, go to www.myelitis.org.uk