The further you go, the longer you walk, or How to become more resistant to multiple sclerosis
I had all sorts of episodes in exacerbations – I was with a cane, with walkers, I even managed to sit in a wheelchair for a while. But the most important thing that I understood is that you can not be depressed and discouraged. You need to adjust yourself to the fact that everything will be fine, no matter what. Probably, this is the main postulate “
Multiple sclerosis is often called a disease of our time. Today around the world with such a diagnosis live about 2.5 million people, in Russia – 150 thousand people. Every year “debutants” are becoming more and more. Often, the first signs are attributed to nervous overwork, but the disease itself can lead to complete paralysis. Until the medicine that cures MS, no. But this does not mean that you can not live with this disease. The fact that multiple sclerosis is not a verdict, story made sure, after talking with Alex Balt , a patient with ten years of experience. Alex talked about how to accept her illness and live on.
About the disease for the first time I learned quite by accident. It was 10 years ago, at that time I worked in a transport company, engaged in logistics – centralized supplies of building materials in Moscow and the region. Formed the next package of documents for the supplier, decided to put them in a file and could not – the left arm trembled violently. Naturally – the panic that happens to me. But I decided that I was nervous.
Multiple sclerosis is a demyelinating disease that occurs against the backdrop of genetic changes that lead to problems in the immune system and are manifested by a large number of neurological symptoms. Combinations of these mutations can be very much, and therefore the symptomatology of the disease can be very different. There are more than 100 options for the onset of the disease. Basically, it debuts at the age of 20-30 years, although there are cases when children with multiple sclerosis or people over 65 years old fall ill. The bulk of the sick are working people of reproductive age. 75% of the cases are women with a certain phenotype: fair-haired, light-eyed Europeans. In Russia, according to average data, about 130-150 thousand patients
However then the symptomatology began to accrue, then I went to the district clinic to the neurologist. The doctor said that, most likely, this nervous overwork or a nerve, but, nevertheless, sent me for examination in the center of multiple sclerosis. At that time, the head of the department of multiple sclerosis Alexei Nikolaevich Boyko gave me five possible options. And then began my ordeals – the diagnosis began, which lasted three years.
Alexandra had to go from a conventional MRI to genetic research – it was necessary to exclude everything. But the most difficult, she admits, was a trip to St. Petersburg to the Institute of the Human Brain of the Russian Academy of Sciences. There it was necessary to undergo a unique PET study, which was supposed to show the affected areas of the brain.
As a result, the diagnosis took three years, and then – the diagnosis of “multiple sclerosis.” While there was a diagnosis, there was a slight numbness, dizziness, pelvic disorders. Later, tremor in his hand increased, tremor appeared. Now I have a tremor of the entire left side of the body.
The first doctor gave me an atypical course of the disease. There is a typical picture of multiple sclerosis – visual disturbances, retrobulbar neuritis, etc. I have never had this. Atypicality manifested itself in the fact that the hand trembled.
Then everything also developed interesting. This, probably, is also called atypicality. In 2010, I was diagnosed, and the therapy was picked up only in November 2014. For four years I’ve tried everything I can: selection of hormone therapy in combination with cytostatics, and interferons, and immunoglobulins.
Previously, while I was receiving immunomodulatory therapy, every three months I went to the hospital in order to remove the worsening and exacerbations that appeared. Four times a year I was a frequent visitor of the center of multiple sclerosis. As soon as the exacerbation passed – I was discharged.
All this was hard and moral, both physically and financially. The maximum that could be done on the basis of the MHI policy is to apply to the district clinic, and there is practically nothing to do there. About quoting and VMP (high-tech medical care, which includes MRI), I found out after that, so I had to do everything at my own expense.
Now I have come to the tableted form. Doctors advise twice a year to undergo therapy, in addition to PITRS (drugs that change the course of multiple sclerosis). I try to stick to this and take additional medications – from tremors, from dizziness. In general, the tablet is never empty, usually 15-18 tablets a day, it all depends on the situation.
At first it reminded me of a sect
Despite his diagnosis, Alexander not only did not fall into despair, but, on the contrary, began to help the same patients as herself. She is vice-president of the Multiple Sclerosis Society. Her usual day begins at 8am and ends near midnight.
Of course, at first everything was not easy, there was both a moment of acceptance and experience, she admits. It all took two years.
In the beginning, when the tremor was minimal, I tried to get a job, but met the slanting views of employers. After receiving the primary disability group after going through the ITU (medical and social expertise), I applied to the Employment Fund, which at that time (2010) offered me two vacancies – a PC operator and a dishwasher. But it was unreal to do this kind of work with one hand, and I decided to abandon this venture. But for a person who has always worked and has been useful to society, it is very difficult to be not claimed.
But gradually I began to help the vice-president, who was at that time. She began to learn from her experience, shared her opinions, led some programs, for example, the passage of medical and social expertise. This is a complete consultation of the patient about what documents need to be provided, what should be on the extracts, etc. This helps the patient avoid mistakes. If someone prompted me at the very beginning, perhaps I would not make mistakes. Therefore, this is a very burning issue for patients diagnosed with MS.
Now I am in charge of the patient from the moment of diagnosis and until I get a disability group. This kind of marching is where to turn and what to do. Plus, with the appointment to the post of vice-president, new functions have been added: preparation of events, holding patient schools, participating in public councils and presidential grants. I also conduct a school of legal literacy for patients, so that the patient, having come to the medical institution, knew about what services he is entitled to receive and how much time it should be spent on. Such schools are necessary for everyone – people should know about their rights and use them competently.
We also build up cooperation with doctors in all five inter-district departments of multiple sclerosis in Moscow. Doctors are aware of the existence of our society and tell their patients about it. In December we, for example, held five schools. Our questionnaires have increased, we attracted about 200 people, these are newcomers. Every year this amount increases. PITRS changes the course of multiple sclerosis, but “debutants”, beginners at the very beginning of this difficult path, still there.
There are very severe patients
Problems with treatment and diagnosis, of course, there is. We, for example, question our patients about what problems they are concerned about. Next, we form a problem sheet and send requests to the authority that is responsible for a particular issue. State structures respond to our appeals, and solve our problems to the extent possible. Then thank them.
The main thing that now worries the patient is why the number of bed days has decreased, why physiotherapy was abolished. Also for patients with multiple sclerosis it is very difficult to get into rehabilitation – in many rehabilitation centers there are restrictions on the age and course of the disease, and some simply do not work with multiple sclerosis and are afraid of such patients. Physiotherapy remained in several hospitals, most of it on a fee basis.
Although physiotherapy, in my opinion, is important. Personally, it helps me. The same magnet relieves the headache, microcurrent therapy helps with numbness. Therefore, with respect to physiotherapy, the choice should remain with the patient – whether he needs it or not.
Last year, there was an opportunity to engage in rehabilitation remotely. A special branch was opened in the rehabilitation center on Ivankovskoye Highway. The patient is brought to the house Motomed, an exercise bike – forced rotation of hands and feet, for 21 days in use. Plus you need internet access. During the rehabilitation period, 12 sessions of exercise therapy with an instructor are held, in the form of an on-line conference. Also, on the basis of a full-time / correspondence consultation with the neurologist of the center, a decision is made about the need for classes with a speech therapist and a psychologist. In my opinion, this is the best thing that can be for those who do not have the opportunity to come to the center itself.
Of course, there is still a big problem that concerns heavy patients. These are those who are bedridden or in a chair. Not all of them have relatives, so the problem of care and supervision of doctors is acute. There are severe patients who have not been seen for years. Earlier, severe neurologists came to the serious patients, now this is not. Plus, of course, the problem of an accessible environment.
With regard to drugs, PITRS are issued under the program “Seven high-cost nosologies”, and if there is a diagnosis, the patient will receive them for free. But the treatment is not limited to these drugs alone. Doctors recommend vascular therapy, drugs that take away the symptoms. The majority of patients buy them at their own expense, since they do not want to take analogues. There is a list of vital and essential medicines (VED), but it contains international non-proprietary names (INNs), not their trade names. And here there is a problem of original preparations and analogues, which has been talked about more than once.
Now some medicines are being tested clinically, but there are few of them, and we as a patient community do not have direct information about them. Usually we learn from the Internet about this. We ourselves only for such studies. Many patients believe in the very magic pill that will cure multiple sclerosis. We also believe that such a drug will come up.
Helping others – helping yourself
I had all sorts of episodes in exacerbations – I was with a cane, with a walker, I even managed to sit in a wheelchair for a while. But the most important thing that I understood is that you can not be depressed and discouraged. You need to adjust yourself to the fact that everything will be fine, no matter what. Probably, this is the basic postulate. I will quote my first doctor who was in my hospital – the further you walk, the longer you go. In this there is something.
Many after all, when they learn about the diagnosis, they start to sit on the forums, read all this, going further and further into the problem. During the time that I took for perception, I myself read so many things that after all this I could be identified in a mental hospital. Therefore – no forums. But there are many support groups for patients with this disease, where they talk about their lives and support each other. Finding them at once can be difficult, but it is most convenient to search for communities by tags, for example, # PC # Stronger RS ??# Stronger Dissipated Sclerosis.
The main thing – find your doctor. Trust him, I say it, even in spite of my long diagnosis. In this case, you can not advise something. Whenever one of my patients asks for advice, for example, what to drink when I am rescued, I say one simple phrase – that the Russian is good, then the German is dead. There are no two identical multiple sclerosis. Only a doctor can give an appointment. The patient should not self-medicate, based on the experience of colleagues in the disease.
A year ago I had a hobby, I started drawing pictures by numbers. She has already painted 10 paintings. I come home in the evening and start drawing with shaking hands … And so I sink into it, that everything is pushed to the background. Therefore, find such an occupation for yourself, to avoid professional and emotional burnout.
I can not say what exactly gives me strength. But maybe, if I had not done all this, my condition was different. Helping others – you help yourself. This is not my phrase, but it works. My statement – help, support and understanding – is all that a patient with a diagnosis of MS needs to know for himself.