Patients and their relatives with the suspected or confirmed diagnosis of amyotrophic lateral sclerosis (ALS) or another disease of the motor system attend our outpatient clinic.

The participation of relatives throughout the consultation is expressly wished and is a great help for patients especially during the first visit.

In the majority of patients, the diagnosis has already been made in a doctor’s surgery or other clinic and shared treatment in our outpatient department has been recommended. In other patients, a final diagnosis has not yet been made so we are asked by neurologists and other medical colleagues to establish the diagnosis.
 
After the first visit, regular outpatient care is decided on in collaboration with referring colleagues and with the patient’s agreement, and a further appointment is made. When ALS is diagnosed, visits at 3 month intervals are planned. This visit frequency has proved appropriate and has become established in most special outpatient departments in Germany and other countries. Reattendance at 3 month intervals is necessary and at the same time sufficient to ensure appropriate counselling on symptomatic treatment and other medical decisions. In the case of minor disease progression or supraregional referral, individual appointment intervals are possible, e.g. after 6 or 9 months. Longer intervals between visits are justified in the case of motor neuron diseases with a slow course, including spastic spinal paralysis (SSP), hereditary spastic paraparesis (HSP) or spinal muscular atrophy (SMA). Individual appointments are usually made in the case of these diagnoses.

Some of the patients are already under the care of another clinic and are referred to us for a second diagnostic opinion. Such assessments usually involve a single appointment and do not usually lead to further care in our outpatient department.

We send a report to your doctor and to you on the results of our investigations and the treatment recommendations in the form of a doctor’s letter. In certain situations, there is also a telephone consultation with the doctor who has referred you. A second opinion is a common and desirable practice in medicine even for patients whom we are treating.

Over 750 outpatient visits take place in our department. About 150 attend regularly at intervals of 3 months.

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