Dr. Chaos

How to live if you are seriously ill, but no one knows what? Renata Serebryakova recorded the stories of three young women who have not known their diagnosis for many years

Ksenia Nikolaeva, 35 years old

When I got sick, I was 26. Almost 10 years passed since then. It all started with the fact that I began to cough terribly. It was spring, and from the first sun I was covered with a terrible urticar. The doctor suggested that I have pneumonia, and sent to the dispensary, where they made me a diagnosis: bronchial asthma. But it was hard for me to inhale, while asthmatics, on the contrary, had problems with exhalation. The shortness of breath was such that periodically I could not walk and even talk. I was prescribed an inhaler - a strong drug with a hormonal component. I returned to the doctors, complained, and they said: "The girl, what you want from us, you have bronchial asthma." Several times I was kicked out of the trolleybus: I began to choke, and people were afraid that I would infect them Twisting this quote from the trolleybus several times: I began to suffocate, and people were afraid that I would infect them.

A year after the onset of the disease, I could no longer reach the doctors. It was only sitting to breathe. Each breath was with difficulty. I called an ambulance, I was taken to the hospital and there was already prescribed therapy from bronchial asthma. A month or one and a half I put me droppers. The diagnosis remained the same.

Bronchial asthma is an allergic disease. Therefore, the next place where I got was the Institute of Immunology in Kashirka. They examined me there: they made bronchoscopy and washing to check if I was poisoned, they took a bunch of tests for anything. Relatives throughout Moscow drove me to different laboratories. Immunoglobulin, which identifies an allergic state, was increased in my blood hundreds of times, but allergy tests did not give results.

Ksenia lost most of the muscle mass photo: Maria Ionova-Gerin for TD

Finally I got to the head of Moscow. He said: "This is not bronchial asthma, but what - I do not know." At the Institute of Rheumatology, his words confirmed: “This is not bronchial asthma and no lupus. Look for further. "

I again got to the Institute of Immunology. They began to say that my disease is not like asthma, rather it resembles an autoimmune disease. And then an alleged diagnosis appeared: Charga-Strass syndrome. I began to read about this disease on the Internet: they wrote there that I had four years to live I began to read this quote about this disease on the Internet: they wrote there that I had four years to live. My youngest child was then a year and a half, the eldest - four.

From the Institute of Immunology, I was sent to the clinic of the professional lifelion of Tareev. There, the doctor said that he did not know what it was, but he prescribed hormonal therapy, already in tablets. It became easier from her. I am very thin, but my face and neck swelled from these pills. This is nothing, I saw where the worst consequences.

After hospitals and hormone therapy, my condition temporarily improved, and the results of the tests were not so terrible. Some doctors asked: “What did you come? Everything is fine with you. ” In such a situation, you constantly feel humiliation: as if your goal is to beg for something, as if you are convinced by someone that you are sick. And you begin to think: "Suddenly I went crazy?"

From any insignificant sun, even through the glass, I was immediately covered with urticaria. But when I talked about this, they did not believe me, they said that this could not be. If I drank at least two grams of alcohol, tears flowed right away, and poured from my nose. My legs were bruised, although I did not hit. And again: no one believed.

It turned out that different medical structures have their own rights and opportunities to make diagnoses. If the doctor is a pulmonologist, he will not watch his legs. If a neuropathologist is a drum on the lungs. And the Institute of Immunology or the usual clinic cannot diagnose the Charg-Strass Syndrome.

Ksenia has been sick for more than 10 years

In the Tareev clinic, I accidentally met a person who is almost the only one to deal with this syndrome in Russia. There is a special marker confirming my disease, but in a third of cases it does not appear in analyzes. Then I took a biopsy of muscle tissue from my leg. The doctor looked at all my papers, me and my bruises. I drove me to the samples of the lungs. And he confirmed Charg-Strass Syndrome. I sent extracts to Israel, to Germany and France - everywhere I agreed with both the diagnosis and treatment.

This is an autoimmune disease, and it is not known where it comes from. It is also called systemic vasculitis. The vessels suffer from him, I have very small ones. This disease is not treated, it can only be extinguished. I was immediately given disability, and some medicines began to be issued in the clinic. Those, for example, are a penny, but at the same time finding them in pharmacies is very difficult. On all these tablets, I managed to achieve the stage of remission. The course of this disease is individual for everyone. Gradually, the number of drugs is reduced to me, and in general it is much easier for me. True, due to hormonal drugs, I had a cataract.

For a long time you come to your senses and try to understand if you have invented it. What to do, where to go? I was repeatedly sent to a psychotherapist. I went to the psychologist and hoped that I was about to jump out of this, and everything would end. Due to illness, I could not finish my studies. Even with her husband, she divorced, thought, I’ll run away from the illness.

Anya Korovushkina, 24 years old

Since childhood, my stomach was sick, mutil, and at 10 years old I began to choke. Doctors said that it was vegetovascular dystonia and pancreatitis. At the age of 19, the condition worsened. But the doctors continued to say that it was vegetovascular dystonia, and prescribed Fenibut to me. During bouts, I lacked air, my hands twisted. In the ambulance, it was believed that I had a hysteria, and they introduced a relanium. Finally, my temperature is constantly increased, and it does not get down.

Because of shortness of breath, I had to leave the second year of the music school-I am a pianist, I have been playing from three years old. Because of shortness of breath, I had to leave the second year of the music school-I am a pianist, I have been playing from three years old I managed to transfer this quote to the conservatory. There are two and a half courses I played with temperature. And then she broke: she came to the reading from the sheet and could not play. A good reaction is needed, and what reaction can be discussed when you feel bad. Now I'm on academic leave. I do not study, I do not work.

I live together with my grandmother, she is 90 years old. Mom and stepfather - separately. Mom did not understand what was going on with me until she went to Israel with me and did not see how I felt. Before that, she did not believe me. The stepfather said that since the liver is increased, it means that I am a drug addict. Now he is seriously ill, and mom is busy caring for him.

Anya is still listed at the institute, but he cannot go there for a long time. The notes rarely take - lacks strength. Photo: Maria Ionova-Garbin for TD

How much I spent money over the years is difficult to count. For several years, almost every day I passed tests in the “hemotes”. A bag with my pictures weighs a few kilograms. In the beginning I spent my money. I was earned. You will play in the club - in five minutes of performance 20 thousand. I voiced advertising on the radio - 15 thousand. And also a scholarship and a pension for the loss of the breadwinner: the father died when he was 28 years old. When the money was over, friends began to help, collected on friends. Now there are no more pensions, scholarships too, but I'm on academic leave. I turned to funds, but they cannot help a person without a diagnosis.

Until my 22 years, pancreatitis was listed as a diagnosis. But with pancreatitis, high blood amylase rates in the blood, but they were not so high. Nobody could confirm pancreatitis nor refuting, and they treated me wrong. Every fall and spring the bouts continued. Once I decided to go through multpropy computed tomography of the abdominal cavity. "What do you have with the liver?" - They asked me there. Pictures showed that the liver is very increased and is in the pelvis. It occupies almost the entire stomach, its size is 22 centimeters diagonally, while the norm is less than 10. It became clear that pancreatitis is a reaction to something else.

The results of all tests and examinations did not agree with the size of the liver and fever. I visited the best doctors in Moscow, and no one took me. I visited the best doctors in Moscow, and no one took up for me Twisting this quote in the Tareyev clinic took a bunch of tests, excluded many liver diseases, did not find the liver pathologies. In the clinic of nervous diseases, they forced to measure the temperature a hundred times a day, keep a diary. They suspected a systemic lupus erythematosus, but she was not found at the Institute of Rheumatology. The famous transplantologist Sergei Gauthier said that it could be a lymphoma. At the Research Institute of Hematology, a consultation was collected and said that it was not a lymphoma. In the center named after N.I. Pirogov, - that I have cystic fibrosis. I passed the analysis - it turned out, not he.

In hospital No. 123, it was first suggested that I have Badda-Kiari syndrome-hepatic vein thrombosis. I was made MR-Kholangiopancreatography, it turned out to be a dead end in Vienna. To start the examination in Pirogovka, it was necessary for 200 thousand rubles or a guarantee letter. I had neither one nor the other. For 40 thousand, she made angiography - the x -ray of blood vessels. So it turned out that I have fifty percent stenosis of the lower hollow vein. The speed of blood flow was reduced. But the liver biopsy, which was made to me at the Research Institute of Gastroenterology, did not confirm the Badd-Kiari syndrome. They told me: everything is ok, live calmly.

The stomach continued to hurt, I did not eat anything and constantly anesthetized myself. The ambulance brought me to the same hospitals where no one could help me. It only got worse. Once I decided not to call an ambulance anymore. And we started collecting money for examination in Israel. Once I decided not to call an ambulance anymore. And we started collecting money for examination in Israel Friends, friends, acquaintances helped to twist this quote . They raised six thousand dollars, and I went. At this moment, the dollar grew to 80 rubles, we lost some of the money for exchange.

In the Israeli clinic, for some reason, they gave me not a hepatologist, but a gastroenterologist. He said that the tests are normal, pictures too. Badda-Kiari syndrome did not confirm. We threw a lot of money and stayed with my mother in Israel almost without a penny. From there, I wrote to the doctor who made me angiography, and asked me to connect me with some doctor in Israel. He sent me to Professor Belenky. Belenky is a world figure, a very famous surgeon. He looked at the disks with the pictures and right in the pictures he saw blood clots in the veins. A few pieces. According to the pictures, he diagnosed: the thrombotic syndrome of Badda-Kiari, the transferred thrombosis of the lower hollow vein, pulmonary veins, possibly thrombosis of the veins of the head. Thromboembolism, that is, inflammation of the veins, is in question. That is why I constantly had a high temperature.

In the grandmother's chair.

It turns out that during the illness I have formed a large collateral network: the pictures see additional moves along which blood came. Thanks to this, I did not die: blood rested on a blood clot and broke off other moves.

Now it is clear that my illness lies in the field of vascular surgery, not hepatology. But I can’t knock down the temperature even with hormone therapy. And this means that we still do not know something. Every five days I stake a course of a thrombustment of the drug. You need to wait until the liver begins to decrease.

On December 7, we gave the discs in the RNTSK named after Petrovsky. The head of the vascular surgery was confirmed by the Badd-Kiari syndrome, thromboembolic syndrome, and right ventricular heart failure, from which I have shortness of breath. But in order to confirm this diagnosis, confirmations from the clinic and the hospital are needed - an extract from the hospital.

The second month I do not leave home. In one of the hospitals where I got with pancreatitis, I met a doctor who felt sorry for me, well, it is interesting what kind of liver it is so big. He helps me all this time. Now he is buying me medicines and products with his own money. I am alone all day. Waiting for the doctor to come.

Varya Korenova, 37 years old

I got sick unexpectedly, in the fall of last year. At first I thought that I was poisoned, there was something with the intestines. At the same time, I began to itch, and then lymph nodes began to increase throughout my body. The temperature has risen 37-37.6, which still holds and does not get down. At the end of December, chest pain appeared. Since then, this pain only increases - it is unbearable, and painkillers do not act on it.

At first I went to the district clinic, but it quickly became clear that to contact them to no avail. I began to comb special hospitals and research institutes: hospital No. 57, hospital No. 5, Botkinskaya, Tareev clinic, Blokhin oncological center, Herzen Institute, and the Institute of Rheumatology. I can write a guide to Moscow medical institutions, it will not be optimistic I can now tweet this quote, I can write a guide to Moscow medical institutions, but it will not be optimistic.

Twice I did a PET-positron emission tomography, when they introduce radioactive glucose and see if there are malignant cells in the body. I was treated for neuropathic pain, from intercostal neuralgia, from somatoform disorder. But nothing helped. Toracalgia of unclear genesis - pain in the chest, lymphadenopathy of unclear genesis - an increase in lymph nodes, subfebrilizes of unclear genesis - fever. How to treat is incomprehensible.

For all analyzes, everything was in order with me. I checked all the viruses, for tuberculosis, to the lymphoma. But every day I got worse and worse. If there are seven circles in hell, then I’m already 128. Everyone shrugs: this is not ours. If there are seven circles in hell, then I'm already 128. Everyone says: this is not our Twisting this quote most often doctors say that it does not look like anything, and send to a psychiatrist. Psychotherapists are a general hobby among doctors, they just send them to them.

I went to Kashchenko myself. She said: “Good - since it is psychosomatics, remove it, treat me. I have a child, mom, I want to live normally, take care of them. ” Five days later, I was betrayed in my hands in a vegetable state. They stabbed before hallucinations. Mom later explained what was overdoed with a dose. And they didn’t give an extract, they said that I have a depressive episode.

I went through a thousand different examinations and remained a beggar. I definitely spent eight hundred thousand. First I spent my money, then borrowed, then my friends began to give me. Now friends buy clothes to my child. I do not eat and do not sleep, and if I fall asleep, then the pain wakes me up. I left work, lost an eight kilograms.

I do not know what to do in such a situation. The ambulance is useless to call. They look at my folder and say: "Have you been everywhere, how can we help you?"
My acquaintance works in the charity fund, she decided to help me and sent my history history. But all funds refused, because there is no diagnosis.

One doctor told me: “Have you tried to forget about it? Just stop. " I would love to stop. I do not believe that all this happens to me. I'm tired of doctors, I hate hospitals. But there is nowhere to go.