The patient's journey: multiple sclerosisBMJ 2005; 330 doi: https://doi.org/10.1136/bmj.330.7496.885 (Published 14 April 2005) Cite this as: BMJ 2005;330:885
- Michaela Langgartner, specialist in training, Department of Pediatrics ([email protected])1,
- Ingrid Langgartner, technician2,
- Marcus Drlicek, pathologist, Clinical Institute for Neurology1
- 1 Medical University Vienna, Allgemeines Krankenhaus Wien, Währinger Gürtel 18-20, A-1090 Wien, Austria,
- 2 Department of Anesthesiology, Laboratory for Blood Groups, Landeskrankenhaus Kirchdorf, Hausmanningerstraße 8, A-4560 Kirchdorf, Austria
- Correspondence to: M Langgartner
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 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 …
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