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 atQueen Mary University of London, and a Consultant Neurologist at the Royal London Hospital, UK. Klaus has a keen interest in MS and focuses his research on the underlying mechanisms of the disease and the use of imaging tools, such as magnetic resonance imaging (MRI), to improve diagnosis.

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’. As part of this initiative, discussions are ongoing about how to help PwMS to 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 encourage 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 they may be unsure of the relationship to MS, or to other factors such as comorbidities or ageing. These symptoms are invisible as they may be not always be identified by a neurology exam or MRI scan.

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 treat the symptoms, or embarrassment.

There are steps that both PwMS and healthcare teams can take to help facilitate these conversations. For example, PwMS could prepare for their appointment by making a list of items they wish to discuss (which can be supported by tools such as myMS priorities), and healthcare teams could be trained to empower 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 listen to the latest podcast episode now. To hear previous episodes of these collaborative podcasts, click here.