Amyotrophic Lateral Sclerosis
Who is affected by ALS?
ALS (amyotrophic lateral sclerosis) is a progressive neurological disease associated with increasing muscle weakness. The disease usually begins between the ages of 50 and 70; its cause is largely unknown. Overall, around 3 to 8 out of 100,000 people have ALS. ALS occurs in three forms, which differ in their frequency:
- sporadic (i.e. occurring sporadically)
- familial (i.e. frequently occurring in families)
- endemic (i.e. more common in a limited area)
Sporadic amyotrophic lateral sclerosis is by far the most common form. Familial ALS has a frequency of about 5 percent. The endemic form means that the proportion of people with ALS in the total population in the affected areas is significantly higher than in other regions.
Hypothesis: There are certain white blood cells called ALS cells. These cells migrate into so-called extrapyramidal nerve tracts and are responsible for involuntary movements of the skeletal muscles. If these are blocked, paralysis of the nerve tracts occurs.
What kind of pain is associated with ALS?
Initially, the disease is painless.
What are the first signs of ALS?
- swallowing disorder
- breathing disorders
- stumble indistinct
- fasciculations (muscle twitching)
- muscle wasting, muscle weakness, and muscle cramps
- loss of stamina
- faster fatigue of the muscles and the feeling of powerlessness
- problems speaking (hoarseness, nasal voice), swallowing, and chewing
- feeling of stiffness in the legs
- decreased fine motor skills
What causes ALS disease?
It is not known what triggers ALS.
Can you test for ALS yourself?
No, this is not possible.
What is the course of ALS?
Amyotrophic lateral sclerosis (ALS) atrophies nerve cells responsible for muscle movement. Eventually, when vital muscles are affected, such as those involved in breathing, death is inevitable in most cases within a few months or years.
How can ALS be diagnosed?
Nerve conduction velocity of muscles, reflexes
What are the limitations of ALS?
ALS patients usually remain fully capable of thinking while their bodies slowly deteriorate. They are soon dependent on a wheelchair and later bedridden. In the end, they can't even breathe on their own. Eating and communicating become increasingly difficult as the disease progresses.
- Weakness in the legs, feet, or ankles, stumbling and falling
- Difficulty walking or daily activities
- Hand weakness or clumsiness
- Slurred speech or trouble swallowing
- Muscle spasms and twitching in arms, shoulders, and tongue
- Difficulty holding your head up or maintaining good posture
Extracorporeal photopheresis (ECP) related to ALS
Extracorporeal photopheresis (ECP) is used, among other things, to treat amyotrophic lateral sclerosis (also known as ALS, myatrophic lateral sclerosis, Charcot's disease or Lou Gehrig's syndrome). In extracorporeal photopheresis, the white blood cells are collected in a bag by cell separation, a so-called apheresis. The collection takes about 2 hours. The cells are then treated with methoxsalen, which makes the cells sensitive to UV light and then irradiated with UV-A light. This radiation destroys the ALS cells. The remaining white blood cells are transfused back to the patient in an IV.
The ECP treatment takes about 2-3 hours and always takes place on two consecutive days. Depending on the severity of the disease and the response, the treatment is initially carried out after 14 days, then at longer intervals depending on the course.
The aim of the well-tolerated therapy with few side effects is to remove the ALS cells so that the blockage in extrapyramidal nerve tracts is stopped.
Therapy with ECP
We have a very good experience with APH therapy. You can also find more information about the therapy on our website . We are happy to explain the content of the ECP therapy in a personal conversation.
What is the life expectancy with ALS?
Life expectancy is a few months to a few years after diagnosis. It's usually 3 to 5 years.
Is ALS curable?
There was no cure for ALS yet.
What is end-stage ALS?
- A wheelchair is required due to muscle wasting and muscle weakness
- It also leads to shortness of breath
- ALS patients suffer from cachexia, severe weight loss
At what age does ALS appear?
The condition usually occurs between the ages of 50 and 70, but can also manifest itself between the ages of 20 and 30.
How many people have ALS?
Today, 3 to 8 out of 100,000 people develop ALS; about 2 out of 100,000 people contract it every year. This frequency is comparable worldwide and means up to 25,000 in the USA and up to 6,500 in Germany.
Which aids are covered by health insurance?
Health insurance does not cover any medical aids.
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