ALS – symptoms and treatment

The beginning and progression of ALS symptoms vary between people. Its initial symptoms may include one-sided muscle weakness in an upper or lower limb, as well as twitches and cramps.

With some patients, the first symptoms appear in the mouth and throat area. They may experience swallowing problems, and their speech becomes unclear.

As ALS is a progressive disease, the symptoms become worse gradually, eventually affecting all voluntary muscles, including the respiratory muscles. As the functioning of the diaphragm weakens, the patient finds it increasingly difficult to breathe, which eventually leads to death.

Muscles weaken as the disease progresses, but it does not affect the senses, circulation, digestion, heart functionality or sexual capability. Mental capability is also generally retained.

The progression of the disease varies highly between patients. After being diagnosed with ALS, patients usually live for three to five years. Around 20 per cent live for more than five years, and around 10 per cent live for more than ten years.

Treatment

There is no cure for ALS, but the patients’ daily lives and symptoms can be made easier by means of medication, practical aids and rehabilitation. The patients’ families need support as well.

The treatment is planned by a multi-professional team in cooperation with the patient. Physiotherapy prevents malpositions and pain and supports the patient’s ability to function. Help from a speech therapist is needed with communication and swallowing problems and the use of alternative communication methods, such as tablet computers.

When swallowing becomes too difficult, a feeding tube can be inserted into the stomach. ALS patients are usually referred to a palliative care unit, which has experience of treating patients with terminal illnesses. Breathing can also be assisted in a non-invasive way, using a ventilator and breathing mask. This technique is very similar to that used for patients with sleep apnoea.

A small number of patients need to have a breathing tube inserted into their wind pipe and more invasive respiratory treatment. Riluzole is used as medication; it decelerates the progression of the disease with some patients. However, riluzole is not suitable for all patients because of its adverse effects, such as nausea. A newer medication, edaravone, is not yet in use in Europe.

The medications can be used to treat the symptoms such as insomnia, pain, spasticity, cramps, anxiety and excessive production of saliva and phlegm.

The expert interviewed for the article was neurologist Hannu Laaksovirta from HUS.