When the fatigue becomes into severe muscle weakness, the doctor can deal with evil dragons

Experts in this article: Zhao Chongbo, Chief Physician of the Department of Neurology, Huashan Hospital Affiliated to Fudan University

Everyone has a moment of fatigue and "feeling the body is hollowed out". Generally speaking, it can be resurrected with blood and chatting with friends on weekends. However, with such a group of people, their sense of fatigue will only become heavier, as if being entangled by the "evil dragon". In the end, we are accustomed to blinking, swallowing, walking, and even breathing, which have become "luxury goods" for them. There are toddler children, younger sisters and younger brothers who are in the flower season, uncle and uncle who become units and families.

They are all patients with severe muscles.

This is a rare disease, with an average of 10-29 people on the average of 1 million people a year. It is an autoimmune disease. Due to the conduction disorders at the nerve and muscle joints, patients will develop symptoms of skeletal muscle weakness: spread to the external eye muscles, may have upper eyelid drooping, double vision, and strabismus; The limb muscles may be very difficult to look up, raise your hands, fists, and go up the stairs; it affects the muscles of the throat, and may appear swallowing, chewing effort, unclear words, and coughing. Patients have difficulty breathing. If the treatment is not timely, there may be danger of life.

"Until now, I have not accepted the fact that I have diagnosed myself, and I feel that this is not the same as the illness and paralysis." Therefore, I lost my job and became a burden at home. "In the group of intensive muscles," weakness "is not only a physical experience, but also reflected in the attitude of life. However, whenever everyone mentioned a name -Zhao Chongbo, the atmosphere of this "group weakness" will ease.

Zhao Chongbo, professor, director of the Rare Disease Center of Huashan Hospital affiliated to Fudan University and chief physician of the Department of Neurology, is a specialist doctor who has been deeply cultivated in the field of intensive muscle weakness.

"There are many patients with neurology, and there is a wave of dysfunction. Whoever has the skills to ask me, his name Zhao Chongbo", a friend also wrote a "poem" for him online. These patients who had just suspected of being terminally ill later had the "leisure and elegant" poetry.

Is Zhao Chongbo "magic" against the "dragon" of severe muscle weakness?

"Long -termism", hopes to find a better treatment plan for patients with weak muscle in China

In 2004, at an international conference, foreign doctors' advanced concepts and diagnosis and treatment techniques in the field of rare diseases in neuromuscular disease made Zhao Chongbo, who had just taken the job for 2 years, was deeply shocked. "At that time, all the research evidence was foreign, which was very unfavorable to the treatment of Chinese patients. Rare diseases were 'unpopular' in the field of domestic medicine, and almost no one was willing to study, but patients needed it, and some people always did it!" At that time, he inherited the "mantle" from the hands of his mentor Professor Lu Chuanzhen, and he mainly attack the severe muscle weakness. Since then, he has become a "main theme" for his life by pursuing "long -termism" as a better treatment plan for patients with severe muscle weakness.

Severe muscle weakness is chronic autoimmune. Do a good job of slow disease management is the key to help patients effectively control the disease. As early as 2009, he registered the online doctor online and began to manage and follow -up clinics through Internet management and follow -up clinics. Over time, more and more patients knew him through the Internet. In 2005, for the first time, he and his team used him for treatment of severe muscle weakness in China, and then led the multi -center forward -looking observation research and double -blind random control research. In 2013, he established the intensive online database earlier in China, laying a foundation for future clinical research. In 2017, the efficacy and safety of small dose of Michael monocyst monoclonal anti -treatment of refractory severe muscle weakness. At present, he and his team have set up a comprehensive clinical diagnosis and treatment system to explore a set of effective medication solutions.

"Teacher Zhao really paid a lot." One of his students said, "I rarely see his travel and vacation, except for the clinics and checks, that is,‘ soak in various academic discussions and conferences. ” With the joint efforts of Zhao Chong and many domestic experts, in the latest guidelines of severe muscle weakness in 2020, some Chinese people's own research data have been incorporated. Of course, Zhao Chongbo's footsteps of "running the road" for patients did not stop. At present, he is still hosting a number of clinical research on new drugs, and strives to find better treatment plans for Chinese patients to find better effects and smaller side effects.

The key is to think like a player

Before the high -ranking players settle down, they will compare the fields, successors, and chess shapes of each step. The next hand must be layout. Therefore, the masters always seem to have a bamboo, in fact, because they have already made a plan for every "emergency".

Zhao Chongbo is such a chess player who "played" with the fluctuating condition. "Compared to most rare diseases, the diagnosis of severe muscle weakness is relatively easy. The key is to use medication. Through positive and standardized treatment, most patients can return to normal life and work. A small part of patients can even heal healing. "The treatment decision needs to be dynamically adjusted according to the patient's feedback, but this requires close cooperation between doctors and patients.

Most of the patients of Zhao Chongbo are in the field, and their condition fluctuates often caught them off guard, so good doctors have become an important channel for them to ask Zhao Chongbo for help. "Dr. Zhao, I haven't taken good medicine these days, my right eyelid has begun to sag, and I have no strength to walk. What should I do?" "At present, my hands are slightly shaking, my legs are soft, my heart is panicked, and I have no strength. Can't go back to the clinic, how should you use medicine at home? "" Each patient is different and the role of the drug is different. While treating the patients, they should also help them consider the possible situation and tell them how to deal with it. " Zhao Chongbo will give patients a few steps of "chess" in the following steps. Such a conversation is happening every day on a good doctor: "In view of the current condition, immunosuppressants need to be added. Suggestion: 1. A, 1 of medicine A, 1 capsule every morning; 2. Do a certain check every week. If a certain value is abnormal, it is necessary to immediately discontinue the A medicine and contact me (remember); 3. Once an organ damage occurs, the organs will damage the damage of the organs. Although this possibility is very small, it can be switched to B or C medicine ... "

Zhao Chongbo also has an important drug principle: do subtraction! Under the premise that the treatment goals are basically achieved, the less drugs are used, the better. Treatment of severe muscle weakness, hormones are almost necessary, but the dosage tests the doctor's skill. "I now use up to 6 ~ 8 tablets of acetic acid to patients every day, and optimize the treatment plan according to the treatment effect, and use the lowest dose to achieve the treatment goal."

Dare to reduce the amount of hormones boldly, and can tell patients that can take several "chess" plans in the back, because he has studied this "chess" for nearly two decades, and he has been familiar with all layouts. There are 8186 such patient cases online alone.

"I personally experienced the happiness of 'medicine to the illness"! "" Doctor Zhao adjusted the medicine for me, the effect was very good, now the eyelids can be lifted, the food and chewing are also strong, the meat can be bitten, the arm can also be bitten, the arm can also be bitten, the arm can also be bitter, the arm can also be bitter, the arm can also be bitten, the arm can also Gradually strong, better day by day "" It has been 5 years, everything is normal "... This patient thanks to the letter, Zhao Chongbo received 1156 articles online on the good doctor.

Only with confidence to convey confidence to patients

Patients with intensive muscle weakness are like a "irregular bomb" tied to their bodies. I don't know if the condition will suddenly repeat the condition, so if you have a little discomfort in your body, you will be frightened.

"To give patient confidence, the most important thing is that the doctor himself must be full of confidence. If you have no confidence, how can you pass the confidence to the patient?" Whether in the clinic or the doctor online, when facing the patient, Zhao Chongbo is Generally Generally General. I am full of confidence and speak. "Emotions have an influence on many diseases, especially self -immune diseases such as severe muscle weakness. If I first convey negative emotions to patients," You will not be good, you will take medicine for a lifetime. ' Isn't this worsening? But if I change to a expression, "Don't be afraid, this disease is controllable and cured. As long as you can return to the clinic regularly, you may only need to use a small dose of medicine to allow you to return to you to regain it again. Normal work and life '. These two expressions are not much different from the substantial significance, but for patients, the meaning is very different. "

"Compared to outpatient patients, online patients, especially those who have not been to my clinic, I feel that they are particularly anxious. I will also give them some 'life guidance'. It is on the occasion, sometimes my relatives and friends tell him, it is useless, but the doctor told him that he may listen to it. Sometimes a word may change your attitude towards many things. Patients can play the role of '灌 病 病 ". Therefore, in addition to the enlightenment in online consultations, every year, large and small festivals, he will send a message to the patients online through the good doctor:

"Everyone's worries are different, and there are diversity, but the essence of the form of life is not as big as Schopenhauer", which was sent on Christmas Eve in 2021.

"Tolstea said that there is unfortunate unfortunateness. Looking at us, some people are either barren, or sickness, or funeral, or distracted, or parting. Life is always full of pain and hardships. Closing a door may open a window. In fact, as long as people pass through the window, people can still integrate into a happy life. "

Be patient, responsible for the end

If there is a doctor, since we found him to see a doctor, he knows that he will always be there and never give up, whether in the hospital or the Internet. How can such a doctor make people unshakable? For patients with rare diseases and chronic diseases, they especially need such a doctor to accompany them to go on.

Zhao Chongbo is such a doctor.

In the outpatient hall in Hongqiao Hospital of Huashan Hospital, such scenes often appear: more than 8 o'clock in the evening, the lights in the hall are secretly, and only the light at the door of the 7th clinic is still lit. "Every time it is Director Zhao the latest, as far as his patients are the most," the security guard at the door is obviously used to it. From 1 pm to 8 or 9 pm, it is "commonplace" for Zhao Chongbo. "Many of these patients have rushed from other places. Since I ran for me, you can add a number." Essence

In the past 13 years, even if the outpatient clinic has always ended very late, when he returns home, Zhao Chongbo will still open the good doctor online and seriously reply to the problem of every patient on the Internet. "Director Zhao, I feel better recently, can I reduce the medicine?" "Can I get the vaccine, will it affect the condition?" "You let the test results come out, please take a look at it" ... .. After these questions were answered one by one, he was really "off work", and his patients could also sleep with peace of mind. "Whether it is an outpatient or a good doctor online, he has never seen him impatient. He always explains the condition to the patient over and over again." His students said that sometimes he couldn't hold on, but Teacher Zhao was as patient as when he received the first patient. "Those patients who are willing to wait until so late are often more helpful, so they need to be more patient for them." He taught his students like this.

Many patients have maintained contact with Zhao Chongbo for more than ten years. They will report the illness regularly online on good doctors online. When the agreed review time, they will not wait to go to the hospital to find him. Good three points.

At the first meeting, Zhao Chongbo always said to the patient, "The weakness of the severe muscles is not as terrible as you think." When I heard this sentence for the first time, patients were always doubtful. However, slowly, they will feel the role of Zhao Chongbo's "magic" on the "evil dragon". They will turn around and encourage patients: "You go to Director Zhao to see, the weakness of the severe muscles is really not so terrible!"

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