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My invisible MS – the patient perspective

30 May 2019

April 2023

Maria Paz Giambastiani talks about what it means to deal with invisible symptoms and how she thinks neurologists could help

There are more than 2.3 million people across the world living with Multiple Sclerosis (MS), and every MS day is a special day for the community, providing a great opportunity to talk about and raise awareness of symptoms, specifically ‘invisible’ symptoms (#MyInvisibleMS), that interfere with patients’ daily lives.

In my experience, patients often express disappointment that their priorities or main concerns may not be being addressed in consultations, and this is particularly noticeable in those who suffer from symptoms that remain invisible. These symptoms could be anything from neuropathic pain, speech and language disorders, respiratory deterioration, dysphagia and dysarthria, all of which can be particularly difficult to talk about, or even identify. Because of this, good communication and multidisciplinary intervention are key to address invisible symptoms, and, as is done in the MS in the 21st Century group, it is vital to listen closely to the patient as a source of knowledge about the disease, because they, in their own way, are also experts in Multiple Sclerosis.

There is a lack of intervention in invisible symptoms for several reasons: there may be a lack of time to discuss and understand in detail the variable situations that concern the patient; there may be a lack of understanding or appreciation on the part of neurologists about the significance of the impact of these symptoms on their patients’ quality of life; but there may also in many cases be no treatments available to modify the course of the symptoms. Neurologists working in MS must learn that listening and empathizing with the patient is just as vital, and appreciate the importance of having these conversations, even when no clinical intervention is possible. We must strive to make both the symptoms and the patients more ‘visible’.

As a group, MS in the 21st Century has been working for several years with both neurologists who are experts in MS as well as expert MS patients. We work together in a number of different arenas, aiming to improve communication, mutual understanding, and education, all for better MS care internationally. The role of the patient has changed in recent years and it is exciting to bring the patient voice to the fore in this way. The communication tools that have been created by the group I feel are useful in helping to reduce anxiety and disappointment caused by misunderstandings and this is especially important in the context of talking about invisible symptoms this World MS Day.