After registering in the Neurology Polyclinic, you sit in the waiting area. You will be greeted there by a nurse from our outpatient clinic, accompanied to a consultation room and asked for the following information:

• Name, address and telephone number of your family doctor
• Name, address and telephone number of your neurologist
• Name, address and director of the clinic making the diagnosis
• Name and address of your health insurance and your insurance number
• Current medications with their trade names, dose and time the medications are taken

After the nurse has asked you questions, you are asked to provide information about relevant previous diseases and how you are at present in the form of a structured interview. In patients with confirmed or possible ALS, the questions are asked using an internationally established self assessment scale for ALS patients (ALS Functional Rating Scale, ALS FRSR). The questions refer to the most varied possible symptoms of ALS, though they are not present in all ALS patients. The answers are therefore extremely individual. The questions are asked with the aid of a small computer which shows the corresponding questions. The patients are asked to touch the appropriate answer using a special pen. When the answer has been given, the next question appears on the screen automatically. Knowledge of computers is not required for this self assessment. In principle it is possible for relatives to give the answers jointly with the patient if the patients themselves are unable to guide the pen because of the motor impairment. It is also possible for a family member to answer the questions on the patient’s behalf. This can ensure that the patient is not overtaxed even if there are severe motor restrictions. Kerstin Krause or Dorit Strassenburg, the department’s study nurses, are also available to provide any assistance. The information obtained beforehand about the patient's self assessment, previous diseases and current medications are provided directly to the doctor via the clinic’s internal computer system so that important information about the patient’s self assessment and previous diseases is available even before the start of the consultation.

Various measurements are then taken by the staff of the outpatient clinic:

• Measurement of weight and height
• Spirometry with measurement of vital capacity and in the majority of patients bioimpedance spectroscopy is performed to determine body composition (the proportions composed of muscle, fat and bone mass)

We also ask all patients for a portrait photo, which we take with a digital camera. We have found that this photo is a valuable addition to our electronic patient file. When you attend for a repeat visit, it is possible that some of these steps will be omitted. Questioning about previous diseases will be limited to the events between the visits.

Doctor patient contact takes place after the preliminary tests. After welcoming you, you will be asked about your medical history with the emphasis on the motor symptoms. You can expect to be asked the following questions:

• Have you any weakness of the arms? If so, since when? (state month and year)
• Have you any weakness of the legs? If so, since when? (state month and year)
• Have you noticed a change in your speech? If so, since when? (state month and year)
• Do you feel any impairment of your breathing? If so, since when? (state month and year)

The interview with the doctor and your description of your symptoms are followed by a physical and neurological examination. This requires you to undress down to your underwear. In a few cases, additional neurological tests are carried out, e.g. electromyography.

After the entire examination, the diagnosis, any further diagnostic steps and treatment options will be discussed. The topics discussed will be given an individual weighting. In the early stage of the disease or when the diagnosis is uncertain, the emphasis in the discussion is on the diagnosis and prognosis. On the other hand, in patients with a confirmed diagnosis or advanced disease, the options for symptomatic management will be dealt with. The need for inpatient treatment or involvement of outpatient cooperation partners will also be examined. Treatment with medications and ordering various requisitions are decided in the doctor patient discussion and the interval until the next appointment is agreed. After the doctor patient discussion has ended, there is further contact with an outpatient department nurse. Depending on the medical decision, a blood test or further tests may be done, You will also be given prescriptions for the required medication, information materials, requisitions and an appointment for your next visit.

As a guide, allow about 1.5 hours for the first visit and up to 1 hour for the repeat visit. If you are taking part in a drug study or research project, different consultation times requiring more time are possible, and these are arranged separately.

After the visit, the referring doctor, the neurology specialist and you will receive a doctor’s letter which summarises the diagnostic assessment and treatment recommendations. It takes 1 3 weeks for completion of this letter.