ABSTRACT

Since 1960 when I became resident in the Neurological Department of the University Hospital (head Prof. Dr A. Biemond) in Amsterdam, I examined about 900 patients with MG of whom 813 are included in this survey. The inclusion criteria were: a. Diagnosis according to generally accepted criteria (3.1 ); b. Follow-up of at least 3 years, or to the patient's death; c. Medical data confirmed by specialists or family doctor. In the first years an active search was made in the archives of several other large neurological centres! and all traceable patients were personally examined and sera were collected for immunological studies (1-7 ). Gradually the acquisition of patients came from referrals from other neurologists to the Neurological Department in Amsterdam until 1976 and to the University Hospital Groningen from 1976 to 1994. About one half of these patients have been under my treatment during one or more periods of their MG; the other half were seen in con sultation, often more than once. Details of the history of the disease were always more reli able and exact when obtained from the patient than from the referring doctor. As onset of the dise ase was taken as the moment of the first specific signs (e.g. diplopia) and not of unspecific symptoms like fatigue. The clinical examination was standardized by means of tests that could mea sure muscle force and endurance, and to make a disability score (DS) at fixed moments during the follow-up (0.5, 1,2,3,4,5,7, 10, 12, 15,20,25, 30, 40 years after onset). If patients were not under my regular treatment, they were followed by telephone call s and if appropriate by obtaining information from their own doctors. I always tried to study the original documents (e.g. PAreports, EMG-descriptions) and to see the original photographs and

histological preparations (muscle biopsies, thymus histology). These attempts usually succeeded though not always without tenacity. Thymectomies were performed in the centres for thoracic surgery, mainly in the University Hospitals, by transsternal approach. Apart from the surgical skills the postoperative management was of utmost importance; for this reason a relatively large number of thymectomies was performed in Leiden between 1965 and 1975. Of the patients included after 1976 most thymectomies were performed in the Academic Hospital Groningen. From 1984 dr J. B. M. Kuks was my associate and companion in patient care and research. Reports concerning the outcome of treatments in several patient groups have been published elsewhere (8-11).