Introduction

Wenn einer eine Reise tut, dann kann er was erzählen

When someone goes on a journey there will be lots to tell afterwards, according to the above Austrian saying. This is how we feel about our description of the journey that is multiple sclerosis. We will not focus on its aetiology, diagnosis, or treatment, but we will concentrate on the experiences of a patient (MD), his wife (IL), and the impressions of one of their children (ML). Looking back on our journey together we will discuss and share our thoughts. A short description of our experiences at time of diagnosis (box 1) and a personal outlook on the future (box 2) are given here; a more detailed description of the journey is on bmj.com

The map

The map of the journey is characterised by good and bad news. The “companions” of the patient and their influence are most important. Our review therefore concentrates primarily on patients with chronic illnesses and their companions. In our opinion, their paths differ substantially, and their demands change during the course of the disease.

The good news

Benign courses without progression for a long time have been reported.1 2 Some patients do not have relapses for years, even without specific treatment. However, the clinical course of the disease is not predicted by particular clinical signs. It has as many different manifestations as there are patients. No one can say whether a particular patient would have done worse without therapy. Statistics of large trials are in favour of a substantial benefit for the patients who receive an immunomodulating treatment.

The bad news

Despite the progress in diagnosis, understanding of the pathomechanisms, and treatment, half of the patients with multiple sclerosis are forced to quit their jobs after 10 years of illness, owing to fatigue and neuropsychological disturbances. This puts an enormous psychological and …