ENWeakness in a hand or a foot, twitching muscles, slurred speech — and then a diagnosis of amyotrophic lateral sclerosis (ALS) made at home. The family wants to know whether the diagnosis is certain and whether anything more can be done. In ALS the nerve cells that control the muscles gradually die, so the muscles weaken.
To be honest from the start: ALS cannot be cured today. ALS treatment in Germany means confirming the diagnosis, slowing the disease where medicines allow it, and keeping breathing, eating and communication going as long as possible. This page covers the diagnosis, genetic testing, approved medicines, breathing and nutrition support, stem cell offers and how AlenMed helps; other conditions of the nervous system are covered under neurology in Germany.
Confirming the Diagnosis: Ruling Out Conditions That Look Like ALS
There is no single test for ALS: the neurologist confirms it by ruling out look-alike conditions, combining the examination with electroneuromyography (ENMG), a test that measures how nerves and muscles conduct electrical signals.
A second look matters because treatable conditions can resemble ALS: compression of the spinal cord in the neck, multifocal motor neuropathy, which affects individual motor nerves, and myasthenia gravis, a disorder of signal transmission from nerve to muscle. MRI, blood tests and sometimes an examination of the cerebrospinal fluid, taken by lumbar puncture, rule them out.
This work-up is done at university neuromuscular centres — for example the Centre for Rare Neuromuscular Diseases at University Hospital Würzburg, where Prof. Nurcan Üçeyler and Prof. Claudia Sommer work.
Genetic Testing and Why It Now Matters for Treatment
Genetic testing shows whether ALS is linked to an inherited gene change, and this now matters for treatment. In a minority of patients ALS is hereditary; the test looks for changes in genes such as C9orf72, SOD1, FUS and TARDBP. A positive result also concerns relatives, so testing comes with genetic counselling and requires the patient’s written consent.
For ALS caused by changes in the SOD1 gene there is tofersen, a medicine given into the spinal fluid by an injection in the lower back. The EU approved it for adults with this form under “exceptional circumstances”, because the disease is rare and complete data could not be collected. Its benefit is still being studied, so it should not be expected to stop ALS. Some patients can take part in clinical trials at German study centres; the doctor decides whether that is suitable.
Medicines and Care That Make a Difference
No medicine stops ALS, but some treatments do make a difference. Riluzole is the established medicine that can modestly prolong survival. Edaravone is not approved in the EU: its application was withdrawn after EMA experts provisionally found its effectiveness unproven.
Breathing: non-invasive ventilation delivers air through a mask, at first usually only at night, and relieves breathlessness and poor sleep. Nutrition: a feeding tube placed through the abdominal wall into the stomach (PEG) is planned and placed early, before weight loss becomes severe, to prevent wasting.
Communication and mobility: speech therapy helps patients speak and swallow safely for longer, and eye-tracking communication devices let them type with their eyes when speech fails. Physiotherapy, occupational therapy and aids for the home help preserve strength and independence. Palliative care belongs to the team from early on, not only at the end, easing symptoms and helping families plan decisions. This is the approach of the German guideline on motor neuron diseases.
Stem Cells and “Miracle” Offers: What to Check
So far no stem cell treatment has proven benefit in ALS outside clinical trials, even though clinics abroad and online advertise stem cell injections for it. Such courses are expensive, and unregulated cell products can cause serious side effects. Our article on stem cell treatment: what is proven explains where the evidence stands.
A doubtful offer shows three signs: payment for an “experimental” treatment outside a registered clinical trial, a promise to stop the disease, and no neurologist involved. An overview of what is known about ALS and its treatment is available from the US National Institute of Neurological Disorders and Stroke.
Frequently asked questions
Can ALS be cured in Germany?
No: ALS cannot be cured today, in Germany or anywhere else. German neurologists can confirm that it really is ALS and not a treatable look-alike, prescribe medicines that modestly slow the disease and set up breathing, nutrition and communication support in good time. This does not restore lost strength, but it helps people stay independent for longer.
Is genetic testing part of ALS treatment if no relatives have had the disease?
It is worth discussing even without a family history: gene changes are sometimes found in patients whose ALS appears to be sporadic. The result can now affect treatment, because tofersen exists for the form linked to the SOD1 gene. Testing is done only after genetic counselling and with written consent; whether relatives should be tested is decided separately.
Can patients in Germany receive tofersen?
Yes, if an adult’s ALS is linked to a change in the SOD1 gene confirmed by genetic testing: tofersen is approved in the EU, and the authorisation is valid in every EU country, including Germany. Treatment is started by a doctor experienced in managing ALS, with injections in the lower back. How much it slows the disease is still being studied.
When should ventilation and a feeding tube be discussed?
Early, before breathing and swallowing become a serious problem: the German guideline advises informing patients and their families about both options early on. Reasons to see the doctor include poor sleep, morning headaches, daytime sleepiness, breathlessness, choking on food and weight loss. The neurologist and the patient decide together when to start ventilation or place the tube.
How AlenMed Organises ALS Treatment in Germany
AlenMed starts with the records, not the trip: a German neurologist first reviews the ENMG, the MRI and the genetic results. Often a second opinion in Germany is the most useful first step.
If travel makes sense, AlenMed arranges an appointment at a neuromuscular centre, genetic counselling, fitting of ventilation or planning of a PEG, with transport adapted to the patient’s condition, an interpreter and a cost estimate from the clinic before travel. Follow-up questions are handled by video consultation with a German doctor, so the family does not have to travel every time. AlenMed’s office is in Munich; partner clinics are across Germany.
This material is for reference only and is not an offer. The diagnosis and treatment plan are decided by the doctor after an in-person examination.
News on this topic
PIRATE Project Refines Individual Brain Aneurysm Risk Assessment
German researchers launch the PIRATE project to personalize brain aneurysm rupture risk analysis using 4D flow MRI, hydrodynamics, and machine learning.
