The multiple sclerosis course can be different. He is usually characterized by episodes of illness. In other patients, the condition deteriorates continuously. Read about the different types of MS, the severity classification based on scales, and the life expectancy of patients.
Multiple Sclerosis: Course Forms
In multiple sclerosis, physicians distinguish different forms:
- relapsing remitting multiple sclerosis (short: relapsing MS)
- Secondary chronic progressive multiple sclerosis
- primarily chronic progressive multiple sclerosis
In addition to these three forms, there are many intermediate or mixed forms.
Shear remitting MS
In around 85 percent of all patients, multiple sclerosis starts with relapses. Between the attacks, the disease state of the patient remains unchanged. During such an episode, however, existing symptoms worsen and / or new symptoms develop. That can happen within a few hours. Sometimes, however, a multiple sclerosis boost also develops over a few days. How long it lasts is different (at least 24 hours). The time between individual spurts also varies.
An MS boost is triggered by an acute inflammatory focus in the nervous system (though not every cooker causes a boost). In the course of this inflammation, nerve sheaths (myelin sheaths) are destroyed. After the thrust, the destroyed myelin can be partly reconstructed (remyelination). Therefore, the symptoms of the MS episode usually recover completely or partially (remission). Sometimes they persist.
Edited after: H. Schipper, long-term immunotherapy of MS
If the symptoms of a MS episode are largely reduced and there are no disabilities after a ten-year period, experts say that the disease is benign. But it can also come later to a heavy boost, which leads to permanent disabilities. If the illness develops very rapidly with ever increasing complaints, which lead to strong impairments or even to death, it concerns a malignant (malignant) multiple sclerosis course.
By the way: The first disease episode is also called “clinically isolated syndrome”.
pseudo relapses
To distinguish from a real MS thrust is a pseudo-thrust. It is also associated with a worsening of the disease state, but is not caused by a new disease activity (acute inflammatory focus in the nervous system). Instead, a pseudo-thrust can be triggered by, for example, a feverish infection or a pain-related illness.
Trigger for relapses and pseudo-thrusts
Certain factors may trigger MS or pseudo-thrust or lead to worsening of MS. These include:
- Infections, for example viral infections (such as influenza)
- larger operations
- hormonal changes, for example in the puerperium
- some vaccinations, especially those with live vaccines
- severe physical and mental stress (such as heavy work, exceptionally high temperatures, etc.)
- Desensitizing measures due to an allergy (= hyposensitization)
- Immunostimulant drugs (including herbal supplements)
- hot bath (can trigger pseudo-boost, but no MS-boost)
- fast and deep breathing = hyperventilation (can trigger pseudo-thrust, but no MS-thrust)
Secondary chronic progressive MS
If the relapsing-remitting MS remains untreated, the course of the disease changes in about half of all patients within ten years: the relapses become less frequent, and the symptoms gradually increase. This is called secondary chronic progressive form (progressive = progressive). However, there may be periods when the progression of the disease temporarily stops.
Edited after: H. Schipper, long-term immunotherapy of MS
Primary chronic progressive MS
Approximately 10 to 15 percent of all MS patients experience gradual worsening of symptoms and disease from the beginning. Physicians call this the primarily chronic-progressive course form. Again, the MS can stand still in the meantime. How fast the disease progresses overall, is individually different (as with the other forms of progression).
MS Severity: EDSS
There are different scales to assess the severity of multiple sclerosis and to document it during the course of the disease. The most important scale is the Expanded Disability Status Scale (EDSS). The value 0 means normal health, the value 10 means that the patient died because of multiple sclerosis (very rare today).
Table: EDSS or Kutzke scale
Points |
importance |
0,0 |
normal neurological examination findings |
1,0 |
no disability, minor disorder in a functional system |
1,5 |
no disability, minor disturbance in more than one functional system |
2,0 |
slight disability in a functional system |
2,5 |
slight disability in more than one functional system |
3,0 |
moderate disability in a functional system or mild disability in three or four functional systems, but fully walkable |
3,5 |
moderate disability in two functional systems or moderate disability in a functional system and mild disability in one or two functional systems or mild disability in five functional systems but fully ambulatory |
4,0 |
able to walk without help and rest at least 500 m per day; active for 12 hours despite relatively severe disability |
4,5 |
able to walk without help and rest at least 300 m; working all day but with some limitations due to relatively severe disability |
5,0 |
walkable without help and rest for about 200 m; Disability severe enough to interfere with daily activities |
5,5 |
walkable without help and rest for about 100 m; Disability severe enough to prevent normal daily activity |
6,0 |
with one-sided or temporary support (walker) without rest break able to walk for about 100 m |
6,5 |
with permanent, bilateral support (walker) without rest break able to walk for about 20 m |
7,0 |
not able (even with help) to go more than 5 m; largely referred to a wheelchair, but which can be used without assistance; Transfer independently possible |
7,5 |
unable to walk more than a few steps; dependent on wheelchair, which is used with help, possibly E-wheelchair; needs help with the transfer |
8,0 |
largely confined to the bed, but can still sit in a wheelchair; Maintains largely independently with mostly good use of the arms |
8,5 |
also largely bedridden during the day; partly independent care with partial use of the arms |
9,0 |
helpless bed-rest, food intake and understanding |
9,5 |
complete helplessness with disturbed food intake (dysphagia) and communication |
10,0 |
Death by MS |
Neurological check
How many points a MS patient receives in the EDSS is determined by the neurologist in the neurological examination. Above all, he examines how well the patient can go. He also evaluates other functions of the body that are controlled by certain areas of the central nervous system (CNS = brain and spinal cord): Eight functional systems are tested, for example, how well the patient sees, how he can move his legs or arms, if he feels touches, or how good his memory is. Each functional system is rated with a number. These scores, together with the patient’s walking ability and limitations in daily life, then give one of the 20 scores on the EDSS (see table above).
The following scores mark important steps on the scale:
3,0 |
The patient can still go on his own. At a score of 4.0, he can only cover 500 meters without aids. |
5,0 |
The patient can only walk 200 meters without help. He can no longer do his daily work. |
7,0 |
The patient can not walk more than five meters with support. |
8,0 |
The patient is completely bound to the wheelchair. But he can still move his arms well. |
Starting at a score of 4.0, walking ability is the deciding factor in determining the EDSS value. Because beyond this, changes in other functional systems (such as arm and leg movement, concentration and memory ability) no longer lead to an additional increase in the EDSS score, although they also affect the patient’s well-being.
When comparing certain scores on the EDSS, it is important to know that the scale is not linear. For example, a value of 6.0 does not mean “twice as bad” as the value of 3.0. In mathematical terms, the degree of disability increases exponentially from level to level (see figure).
If a patient is diagnosed with MS, his symptoms often change little in the first few years. Nevertheless, the EDSS value can increase relatively quickly because the scale is very sensitive to small changes. Thus, in the early stages of MS, the scale may falsely give the impression that multiple sclerosis is progressing rather rapidly, although it does not. Some patients worry because they go through the lower scores relatively quickly.
EDSS – Practical application
The doctor determines the value on the EDSS at the onset of the disease and regularly later. This allows you to document what the multiple sclerosis course looks like in a patient.
The scores also provide guidance on how well medications or other treatments work. If the patient has an EDSS score below 6.0 and the score increases by one point within three to six months, it is considered that the therapy did not work. If the baseline is 6.0 or more, a half-point increase within that time indicates a treatment failure.
The EDSS is not only used for the course documentation. Sometimes it is also used to decide for or against a therapy. For example, the drug mitoxantrone used for the basic therapy is only approved in Germany if the patient has a progressive relapsing-remitting MS or secondarily progressive MS with an EDSS of 3 to 6. With an EDSS value above 6, mitoxantrone is generally not given. EDSS is also used in mitoxantrone therapy to decide when to reduce the dose.
EDSS values insufficient
The EDSS is not enough to determine the impact of the disease on the daily life of a patient and the size of the limitations. Some symptoms of MS patients are not sufficiently taken into account by the EDSS, for example, how much a patient suffers from fatigue or difficulty concentrating. These symptoms can also lead to premature career withdrawal as well as physical limitations. The EDSS is therefore just a piece of the puzzle to assess the extent of disability in an MS patient.
MS severity: MSFC scale
To check other functions of the CNS, the MSFC scale has been established for some time. MSFC stands for “Multiple Sclerosis Functional Composite” and roughly means “composite functional score in MS”. Here, the doctor checks three areas:
- Function of the legs: The patient walks as fast as possible for a distance of 7.6 meters (if necessary with a walker), twice. The examiner calculates the average value from the two results.
- Function of the arms and hands: With one hand, the patient places platelets in predetermined holes of a plate and removes them again. The examiner determines the time how long the patient needs for each of the right and left sides twice. From this he calculates the average value (breadboard test or 9-hole test).
- Attention and Concentration: The patient should calculate numbers in the head; every three seconds it is called a new number (PASAT-3 = paced auditory serial addition test).
EDSS and MSFC should be recorded regularly in MS patients.
Multiple sclerosis: life expectancy
Life expectancy is only slightly influenced by multiple sclerosis. In comparison to the general population, experts assume that life expectancy will be shortened by six to seven years. A malignant multiple sclerosis course is more negative than a benign one.
In addition, many other factors have an impact on life expectancy – in both MS patients and healthy individuals. These include, for example, divorce, unemployment, low education, dissatisfaction with one’s health and heavy tobacco and alcohol consumption.
The prognosis of the disease thus depends on many factors and is individually very different. Even a good expert can not give an accurate prediction Multiple sclerosis course and to make life expectancy for individual patients.