In this episode Jon Strum, host of the podcast series RealTalk MS, speaks with MS in the 21^st Century (MS21) members Professor Klaus Schmierer and Jane Shanahan about the invisible symptoms of multiple sclerosis (MS) and how to empower people living with MS (PwMS) to talk about their symptoms with their healthcare team.

Professor Klaus Schmierer is a professor of neurology at the Blizard Institute at Queen Mary’s University of London, and a Consultant Neurologist at the Royal London Hospital. Klaus has a keen interest in MS and focuses his research on what causes the disease and how to improve diagnosis with imaging tools.

Jane Shanahan was diagnosed with MS in 2016 and is a patient advocate for PwMS. Since her diagnosis, Jane has developed a strong interest in MS, which is helping her on her journey to better understand the disease, as well as to educate family, friends, colleagues and others about MS.

This podcast episode touches on a theme that is currently being explored by the MS21 initiative: ‘Patient empowerment: knowing yourself and your MS’. It looks at how PwMS can recognize, understand, and talk with their healthcare team about symptoms that are not obviously associated with MS, but are impacting their lives, and how healthcare teams can support their patients by encouraging these conversations. Both Professor Klaus Schmierer and Jane Shanahan have been instrumental in these discussions, and share their perspectives in this podcast episode.

Key episode takeaways:

• ‘Invisible symptoms’ are any symptoms noticed by PwMS for which the relationship to MS or to other things, like different illnesses or ageing, is unclear. These symptoms are invisible as they may be not always be picked up by medical tests or scans.

• PwMS may feel unable to talk about their invisible symptoms with their healthcare team for many different reasons, such as not wanting to complain, not realizing that something could be done to lessen the symptoms, or being too embarrassed.

• There are steps that both PwMS and healthcare teams can take to encourage these conversations. For example, PwMS could prepare for their appointment by making a list of things they wish to discuss (with help from tools such as myMS priorities), and healthcare teams could be trained to develop a mindset focused on empowering their patients.

Useful resources for PwMS:

• myMS priorities: a pre-appointment planning tool
• myMS commitments: a shared responsibility agreement between healthcare teams and PwMS
• myMS roadmap: a tool to provide an overview of each phase of the MS journey

If you’d like to dive deeper into Klaus and Jane’s insightful discussions, click on the button below.  To hear previous episodes of these collaborative podcasts, click here.