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Multiple sclerosis is known as young adult disease. The diagnosis is most often made between the ages of 20 and 40, when you enter adulthood, start or finish studies, start a job, start a family.
Nobody is prepared to receive information that they are incurable or chronically ill. In the case of MS (sclerosis multiplex), the situation is particularly difficult. Usually, the diagnosis is heard by hopeful people entering adulthood. Suddenly, thanks to a short note on discharge from the hospital or on the test result, their plans, dreams must be changed. In an instant, the old world disappears, a new, uninvited guest appears in life whose presence must be respected: multiple sclerosis.
Relax, it’s just a failure
It is very important, if not more important than access to modern treatment, to get to know the “uninvited guest” and his habits well, to learn to live without provoking him. Each person with MS has a different disease, and based on information about the course of the disease in one patient, it is impossible to guess that it will look similar in another. Of course, there are some statistical data showing, for example, that people who initially had optic neuritis have a milder course than those who had mobility problems. These data are purely statistical in nature. Therefore, it is not possible to determine from them how the person will develop the disease.
On the other hand, determining the type of the course of the disease is important both for the treatment and for living with multiple sclerosis. There are: forms of multiple sclerosis:
– relapsing-remitting form – it is the most common form of the disease, it occurs in approx. 85-90% patients. Characteristic for it is the occurrence of exacerbations, the so-called relapses (the appearance of new symptoms or worsening of previous symptoms) and periods of stabilization lasting several months and sometimes even years. The initial course of the relapsing-remitting type is considered to be a clinically isolated syndrome (CIS, clinically isolated syndrome). Symptoms of demyelination appear in CIS, but the diagnostic criteria for MS are not met.
– secondary progressive form – in about 80 percent people with MS, after several years of the disease, relapses stop appearing, the disability grows slowly, gradually, without sudden changes. A person with MS perceives the progress of the disease by comparing their functioning to what they were like a few years earlier.
– primary progressive form – a relatively rare type of MS, it occurs in about 10% of sick. After the first symptoms, there is no remission, the deterioration of functioning progresses without obvious relapses, gradually leading to disability.
– progressive-projective form.- the rarest form of multiple sclerosis. There is no remission, and the disease progresses slowly between relapses.
Some neurologists also distinguish the form of the so-called mild, in which disease progression is relatively slow, relapses are mild, and after many years the patient is still physically fit.
The right treatment depends on the form of MS. In Poland, only people with the initial stage of primary progressive multiple sclerosis can count on reimbursement of immunomodulatory drugs.
How to live…
Importantly, in addition to drugs that may affect the progression of the disease or reduce symptoms, the broadly understood rehabilitation and learning to live with a chronic disease are equally important. Although the course of multiple sclerosis itself is not predictable, it is known that some lifestyle factors affect the well-being of people with MS.
Therefore, it is especially important in the everyday life of a person with MS:
– ability to deal with stress.
Stress is an inherent part of life, but chronic stress weakens the body and increases the susceptibility to infections. Managing stress is one of the basic skills you need to learn in living with MS. It is very difficult, especially at the beginning of the disease, when emotions are dominated by the fear of an unpredictable future. Therefore, it is very important, especially at the beginning of the disease, to contact a psychologist and use psychotherapy.
– avoiding infections.
Multiple sclerosis is an autoimmune disease, which means that the immune system is overactive, it destroys not only pathogens but also the body’s own cells. In multiple sclerosis, it destroys the sheath of the nerve – myelin. Thus, any activation of the immune system, which occurs during an infection, can also provoke the formation of new demyelinating foci in the CNS. For this reason, it is rather inadvisable for people with MS to use vaccinations and the use of preparations that overly strengthen the immune system.
– proper management of own forces.
The structure of the nerve resembles a cable. Myelin, like the sheath of the nerve, is its insulation. Damage to the myelin and the formation of sclerosis at the site of damage – plaques lead to reduced nerve conduction. This means that some activities require more effort, and fatigue appears faster. Unfortunately, increasing the effort beyond the individual limit does not lead to greater efficiency, on the contrary, the possibility of performing the next activity decreases. People with MS should exercise, but – to the limit of fatigue, which you should feel yourself by listening to your body.
– avoiding high temperatures.
Information is transmitted through the nerve as electrical impulses. At higher temperatures, the electrical conductivity of nerves decreases, so the information transmitted through them will arrive with an even greater delay. This means that at a higher temperature (this applies to both fever associated with an infection and, for example, staying on a sunny vacation), a person with MS will function worse, it will be more difficult for him to move, for example. Fortunately, these symptoms are temporary, some experts call them pseudo-relapses.
This phenomenon is used in rehabilitation with the use of a cryochamber. Lowering the temperature causes better nerve conduction, so a person with MS after leaving the cryochamber is able to do more exercises, for example, has a wider range of movements. Therefore, it is important in this type of rehabilitation to use the time after the cryo treatment for appropriate exercises.
– Choosing the right form of movement for you.
The decrease in motor activity is a consequence of the progression of disability. However, it leads to secondary problems: limited mobility in the joints (contractures), joint pain, muscle atrophy, problems with circulation. Therefore, it is very important to find a form of exercise that is right for you after the diagnosis, which will not only prevent problems related to the increase in disability, but also bring pleasure. The effort involved in such movement should be adequate to the physical abilities of the person with MS. There is a rule: we train, not train!
One of the most common mistakes is focusing one’s life on disease, treatment, and giving up current passions. This quickly leads to low self-esteem and even depression. True, MS changes a lot in life, but it may not be at the center of it. He must be like an uninvited guest: we respect his presence, but we live our own lives.
– Healthy lifestyle
The uninvited guest, such as MS, does not tolerate madness, lack of sleep, alcohol abuse … It does not require a special diet, it is enough to follow the basic principles of healthy eating, but it is good to keep an appropriate weight. The reason is simple: increasing the body weight means more effort not only for the heart but for the whole organism. It is also not advisable to lose weight excessively. You need the strength to live with multiple sclerosis.
Text: Iza Czarnecka