In amyotrophic lateral sclerosis (ALS), nerve cells that control muscles perish. Consequences are muscle weakness and paralysis.
The disease may present itself slightly differently in each patient. It usually begins in the arms and hands. Usually only one side is affected at first. A typical sign, for example, is that the small hand muscles or the ball of the thumb on one hand atrophy. Writing, grasping or carrying objects becomes more difficult. Rarely does the disease start in the legs. For example, affected patients have problems walking, they stumble more often. Symptoms such as paralysis, muscle atrophy or muscle tremors gradually spread to other parts of the body. The respiratory muscles can also become diseased at some point, so that breathing is impaired. ALS is a serious disease that typically progresses at a steady pace.
How ALS progresses in individual cases cannot be predicted. To date, there is no treatment that can bring ALS to a halt. The most important pillar of the therapy are measures that alleviate the complaints. Aids can make everyday life easier. The goal of treatment is always to preserve the quality of life and self-determination of affected people as much as possible.
Current study (English): Clinical Determinants of Disease Progression in Amyotrophic Lateral Sclerosis-A Retrospective Cohort Study J. Clin. Med. 2021, 10, 1623.
Read more: Optimized treatment of patients with amyotrophic lateral sclerosis (ALS). Article by senior physician Dr. med. Torsten Grehl, head of the ALS outpatient clinic at Alfried Krupp Hospital, published in Forum Sanitas, 2. 2017 Edition.
Help with donations: We depend on funding to improve treatment, care and research in the field of ALS. Here you will find further information.
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Special consultation for ALS patients
The outpatient clinic for amyotrophic lateral sclerosis (ALS) and other motor neuron diseases is a special consultation hour at the Department of Neurology at the Alfried Krupp Hospital in Essen-Ruttenscheid, Germany. The target group is primarily patients with a suspected diagnosis of amyotrophic lateral sclerosis or a confirmed diagnosis, respectively. The consultation is also expressly aimed at the patient's family members or close relatives. In addition, patients with other motor neuron diseases such as hereditary spastic spinal paralysis (HSP) or spinal muscular atrophy (SMA) can of course also present themselves.
One of the main focuses of the ALS specialist consultation is the diagnosis or confirmation of the suspected diagnosis. Thematized are for example:
– the different courses of the disease (different phenotypes), – the individual prognoses, – possible therapeutic approaches of both conventional medicine and alternative methods, – symptom control of different complaints as well as – current study offers.
The goal is an optimal and individually adapted drug therapy, the provision of aids and remedies (physiotherapy, occupational therapy, speech therapy, etc.), and the provision of aids and remedies.), care and support with regard to any necessary nutritional or respiratory assistance, and palliative care counseling. In addition to the possibilities of maximum care, topics such as therapy limitations and palliative care are also discussed.
For the ALS consultation you need an appointment, which you can find under Phone 0201 434-41529 can arrange. Here you can find more information about the consultation procedure.
Only a few clinics offer ALS consultation hours
Consultation hours with specialized offers for motor neuron diseases (MND), such as ALS, are only offered in a few clinics in Germany – the Clinic for Neurology at the Alfried Krupp Hospital in Essen is one of them. In the meantime, however, there are Germany-wide cooperations between these special outpatient clinics, both to improve clinical care and to establish a scientific platform, or cooperation of the study centers (MND-NET = Network of Outpatient Clinics for Motor Neurone Diseases; GALSG = German ALS Study Group).
Concentrated care for ALS patients at a few locations means improved quality of medical care. If possible, patients are supplied with medication, aids, nutritional aids or respiratory aids via a supply network (outpatient clinic partners, platform for coordinating the supply of aids to patients).
For some of the patients, there is also the possibility of being involved in clinical trials aimed at identifying new drugs for the treatment of amyotrophic lateral sclerosis.
Cooperation in ventilation and nutrition
With the Clinic for Pneumology, Gastroenterology and Internal Medicine, the ALS Outpatient Clinic at the Alfried Krupp Hospital has a competent in-house partner with a great deal of experience with ALS patients. Patients benefit from short distances and fixed contact persons for artificial respiration and nutrition. You can also find more information about the cooperation here.