Living life to the fullest with multiple sclerosis: 9 questions for an expert

According to the Ministry of Health of the Russian Federation, more than 80 thousand people with multiple sclerosis live in the country, most of them young people aged 20 to 40 years. Is it possible for MS patients to maintain their usual active life and enjoy every day they live?

This and other questions were answered by a neurologist, a psychotherapist of the highest category, president of the Moscow Society of Multiple Sclerosis, Moscow Society of Multiple Sclerosis, Olga Matvievskaya.

Around 2,5 million people worldwide have multiple sclerosis. Tell us about how people with MS lived 10-15 years ago and how they live now.

O.M.: Our public organization has existed for 25 years, this year we have an anniversary, so we have seen all the changes with our own eyes. For the first ten years, our activists were looking for an opportunity to get a drug that could slow or stop the progression of the disease. At that time, we did not even dream of anything else. A neurologist at the place of residence quoted to patients with MS the then relevant lines of a neurology textbook: “Multiple sclerosis is a disabling disease, its cause is unknown, and no treatment has been developed.” The diagnosis sounded like a sentence.

Over the past 15 years, medical science has stepped forward so rapidly that now we already know a lot about this serious disease, its diagnosis, ways to change its course, methods of rehabilitation. Currently, with the right lifestyle and timely treatment with a diagnosis of multiple sclerosis, you can live not only a long, but also a full, high-quality life.

Medicines that change the course of the disease have finally become available, and in this regard, the vector of work of public organizations has shifted to the quality of life of both people with MS and their families, to social and cultural rehabilitation, spirituality, personal growth and the development of creative abilities. . It is now clear that such support is needed and almost as important as drug treatment.

Who is usually at risk, in which age groups is multiple sclerosis more common?

O.M.: It is rather difficult to talk about certain risk groups, since the disease still occurs sporadically, although at the moment there is already an array of epidemiological data on its prevalence. In particular, women are affected twice as often as men. Studies show that the prevalence of the disease depends on the geographical latitude: it is higher, the farther the country is from the equator.

The disease can debut at twenty, thirty, and even sixty years, but most often multiple sclerosis still affects young people. The median age at onset of MS is 29–32 years old, young people in their prime. In women, the average age of debut is five years less than in men. However, these are statistical figures. The disease can begin both earlier and later: about 5% of MS cases occur before the age of 18, from 3 to 12% of cases – over the age of 50.

Doctors note that one of the main problems of multiple sclerosis is late diagnosis. What symptoms should be treated by doctors in order not to start the disease?

O.M.A: Yes, that’s a completely true statement. Despite the emergence of high-precision diagnostics and clear criteria for making a diagnosis, a person with multiple sclerosis often does not immediately get to a neurologist, a specialist in this disease, who is fluent in this diagnosis. This is probably due to a very mosaic picture of symptoms: the course and manifestations of the disease are so individual that each patient has his own clinical picture.

Neurologists have nicknamed MS the “neurological chameleon.” In the early stages, it can mimic a variety of neurological disorders. It turns out that between the onset of the disease and the full clinical picture, quite a considerable time can pass, during which a person is treated by specialists of various profiles, but not by neurologists.

But it is quite difficult for a neurologist to miss this disease: in the clinical picture of the debut, sensitivity disorders may prevail. For example, an arm or leg suddenly begins to go numb, or visual impairment (optic neuritis) is fixed, and then vision deteriorates quickly and noticeably. Moreover, the initial symptoms can go away on their own without treatment quite quickly, sometimes in a few days. For this reason, it is extremely important that a person pays attention to such serious and unusual symptoms at their first appearance and turns to a neurologist in time.

Multiple sclerosis is a socially significant disease of the central nervous system, the causes of which have not yet been fully established. It has nothing to do with senile dementia and atherosclerosis of cerebral vessels, representing an independent disease that manifests itself mainly in young and middle-aged people.

What is the level of access to therapy and the level of quality of life of patients with MS in Russia?

O.M.: Unfortunately, the availability of therapy and the quality of life of patients are values ​​that are not always comparable in Russia. In our country, drugs have appeared that change the course of multiple sclerosis, their line is constantly expanding, as a result, the timing of the onset of irreversible neurological deficit has been significantly postponed, which has led to an increase in the quality and duration of the active life of patients. However, patients often face many problems when changing from one drug to another, a long wait time for the right drug can play a fatal role in treatment.

However, the quality of life, as defined by WHO, affects not only medical criteria. The level of availability of expensive, but free for the patient, modern pathogenetic therapy for multiple sclerosis in modern Russia is very high and is comparable to the drug supply in developed European countries.

And yet we have our drawbacks. This is a poorly developed infrastructure for people with disabilities, and the mentality of the society in relation to the disabled, local problems and much more. Simply put, a person can receive expensive treatment under the federal program “12 high-cost nosologies”, around him there can be perfectly equipped cultural, domestic and leisure centers, a superbly renovated city clinic – it would seem, what more could you want.

But the wheelchair of this person does not fit into the elevator doors, and there is no ramp at the entrance, sometimes there is no elevator itself. These are the problems that should be worked on locally in the first place.

One of the most traumatic experiences of a person with multiple sclerosis is the fear of losing a job and becoming disabled. It’s true? Or can you live a full life with MS, do what you love?

O.M.: The disease debuts at a young age, at the very rise of personal and career ambitions. Many at this time only have a family, children and a stable job. At this moment, an insidious disease makes its own adjustments to a person’s plans. Of course, this is hard, a person and his relatives experience a real shock for the first time after the diagnosis. In such a situation, a lot depends on the objectivity of the information about the disease that they receive. It is extremely important to turn to trusted sources, not to trust everything that is found on the Internet.

Of course, it is possible and even necessary to live a full life with multiple sclerosis, start a family and do what you love. Doctors have learned how to manage pregnancy in women with MS. It is possible and necessary to give birth to healthy children with this disease, we have women who have given birth to several children after the diagnosis. For a full life of people with multiple sclerosis, a lot of work must be done by the state and the non-profit sector.

It is necessary to support the family, explain to relatives how to behave correctly, how and where to carry out rehabilitation, tell relatives how to find an approach to a sick relative. And in Russia, this work is underway. To do this, there are media, thematic portals and public organizations, where you can always contact with any questions.

People with MS can get higher education, create families and build careers, and be an active part of modern society. In most developed countries of the world, with effective treatment, multiple sclerosis does not affect the socialization of people with MS.

By the way, psychological support often falls out of the attention of relatives of people with multiple sclerosis. What kind of assistance does your social project provide? What psychological techniques, besides drug therapy, help a person to remain a part of modern society, not to lose interest in life?

O.M.: A psychological crisis is an integral part of the acceptance of any chronic illness, because the presence of a progressive disease in one way or another affects many aspects of the life of a person and his loved ones. Each person is a unique individual, and the process of adaptation to a neurological disease occurs in each family at its own pace. There is no “correct” way through all the stages of accepting the disease, but it is extremely important that there are like-minded people and positive examples of people who have achieved adaptation and acceptance, who have learned to control their disease, who have not allowed the disease to control their lives.

In this regard, our organization MOOOI “Moscow Society of Multiple Sclerosis” is doing everything possible so that a person does not withdraw into himself, sees that a full life with this disease is real. We have many channels of information where we publish success stories of people who have overcome the crisis of diagnosis: mosors.ru website, YouTube channel, instagram, telegram, pages of the organization are in all social networks.

The projects are very diverse: hippotherapy with horses – sensitive and kind animals, solving problems with employment and therapy, legal assistance, sports, rehabilitation centers. Several times a year we organize themed holidays and flash mobs dedicated to the International Multiple Sclerosis Day. There is even an entire MS Week, traditionally held in May every year. With these events, we not only want to draw the attention of the general public to the problem of our disease, but also to show newly ill people that life after diagnosis is just beginning.

Rehabilitation projects and help from us is only part of the journey. A lot in the course of our illness depends on the attitude of the person himself and his relatives to what is happening, on how productively he and his family will be able to mobilize their internal resources in a difficult life situation and adapt to the changed conditions of life, not only in the physical, but also in the psychological plan. In our social projects, in addition to concrete and targeted assistance, we try to give hope – to bring strong-willed and self-confident people to the fore.

They perceive the disease as a challenge to themselves – this is the key to victory. They manage to overcome themselves, perceive the disease as a task set before them by life, a task that must be dealt with by all means. These are inspiring people, you want to join them, stand next to them. It is within the power of each of us. Indeed, motivating examples teach how to cope with stress not only for people with multiple sclerosis, but also for absolutely healthy people with psychological problems.

We are read by people with multiple sclerosis and their families. What would you advise them now, how not to stop fighting and not to give up?

O.M.: You can start small – contact us. The goal of our public organization is to objectively inform and promote the realization and protection of civil, political, economic, social and cultural rights of people with multiple sclerosis and their families. Water does not flow under a lying stone, this is a fact. Close people, relatives and friends often tend, out of the best of intentions, to maintain in a sick person the confidence that he is seriously ill, or, conversely, they seek to oust thoughts about the disease and the need for long-term treatment from his mind. However, this only hurts them.

There is no need to turn a blind eye to the problem, another tactic is more effective – openly discuss the difficulties that have arisen, encourage a sick loved one to be frank in their experiences, allow him to consciously build his life and decide for himself what he can afford and what he will have to give up in life.

With a conscious attitude to the disease, a person seeks to improve his condition as much as possible, take supportive treatment, and engage in continuous physical rehabilitation. Therefore, it is extremely important to set life priorities from the very beginning. The more confident a person learns to live with his illness, the less fear he will experience.

The rules of existence with multiple sclerosis are not many, and they are very simple. No one requires us to immediately significantly change our lifestyle from the moment of diagnosis, the disease does not impose any special restrictions on professional and creative activity either. The motor deficit progresses slowly, which makes it possible to compensate for the upcoming disorders and adapt to them. Fear and confusion are natural at first. However, modern methods of treatment can change the course of the disease and slow down its progression.

This must be remembered for sure. RS is not a sentence. Therapeutic measures provide, first of all, modern pathogenetic and symptomatic treatment in combination with continuous physical and psychological methods of rehabilitation while maintaining a good mood and an active lifestyle, a favorable psychological climate in the family.

What positive changes do you observe in people who seek help from specialists?

O.M.: At the very beginning – and in MosORS we know this firsthand – it is not easy to get rid of the feeling that others do not understand you, they leave you alone face to face with your problem. This feeling enhances the fears and feelings caused by the disease. At such moments, the environment of like-minded people who have already overcome confusion and shock is valuable. Among our activists there are vivid examples of how admirable way many people with this diagnosis have managed to organize their lives in an interesting, full and dignified way, and they are happy to share this experience with everyone.

Our motto is “Together we are stronger than RS”. We all in MosORS have been living with this diagnosis for many years and sincerely believe that a full life with multiple sclerosis is our right, our reality.

And, probably, one of the main questions for our readers with MS. How to find your doctor?

O.M.: Of course, the question is very important. One of the key principles of gaining control of the disease is maintaining a trusting relationship with the attending physician, a specialist in multiple sclerosis. If for some reason you don’t feel like you’ve made contact with your doctor, see another. Psychological comfort arising from communication is obviously a positive signal.

It is optimal when the attending neurologist performs the mission of a trusted person, to whom a person can turn with any intimate question related to the disease. As a rule, such a doctor has extensive experience in working with this particular disease, is in the trend of modern trends in treatment and rehabilitation, and follows international publications on the topic of MS.

A specialist who observes many people with multiple sclerosis in his routine practice knows well what questions arise both during the formulation and progression of this disease, since these problems are very similar for all patients. A person who has found a common language with his doctor and regularly follows his recommendations can be sure that his disease is under control.

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