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The bone marrow was not diagnosed, but the redness and swelling around the needle hole helped the doctor find the cause of my illness

Many people have had mouth ulcers. For most people, this is a small problem similar to "getting on fire". But for me, it was a manifestation of another disease that I didn't realize at first.

Mouth ulcers are constant

Is it toothlessness or too much spicy?

I have had frequent mouth ulcers since junior high school, and at first I thought that my teeth were not growing well and I often bit into the flesh in my mouth. Although this did not seem to me to be a big problem, the pain caused by mouth ulcers would make me unable to eat properly for a while, so in addition to having a spray to treat mouth ulcers at home, I also did orthodontics after graduating from junior high school, hoping to reduce the chance of ulcers caused by biting the oral mucosa.

During orthodontics, my oral mucosa was also often scratched by steel wires, resulting in traumatic mouth ulcers. Because the ulcer healed after a while, it did not attract my attention. In this way, in repeated mouth ulcers, I spent the whole high school.

I prefer spicy food and also like to eat heavy dishes. After going to college, because I was free from my parents' dietary control, I began to eat spicy and irritating foods such as teppanyaki, yellow stewed chicken rice, and spicy snail powder from time to time at school, and my mouth ulcers were basically not better.

I naively thought that this was too much spicy eating, caused by "on fire", and thought that everyone would do this. Until, when I was eating with my roommate, I always complained that the mouth ulcer was painful, and she said that she was shocked: obviously eating the same thing, others did not have total mouth ulcers. Only then did I realize that the clown was actually myself...

I also went to the hospital because of the mouth ulcer, but the doctor said that there are many factors that cause mouth ulcers, such as "fire", lack of vitamins, etc., generally will prescribe some drugs to promote the healing of the oral mucosa, and have not been further examined.

Staying up late for a long

I went to the hospital alone for surgery

Slowly, I found that along with mouth ulcers came a "pustule" on the face, especially after staying up late, it would definitely grow one. This not only affects the appearance, but also hurts. So I often go to the department registered in the hospital, in addition to the stomatology department, there is also a dermatology department.

What impressed me the most was that during the time when I was preparing for the graduation project in my senior year, I stayed up late more, and then there were often "pustules" on my face. On the day of the graduation photo, I woke up in the morning and felt a very painful armpit, and when I looked down, it turned out that there was also a "pustule" here. I thought I might need some medicine, so after taking my graduation photos in the morning, I went to the dermatologist alone in the afternoon.

After the doctor's examination, he found that the underarm bag was full of pus, and immediately suggested that I go to an outpatient operation, clean the pus inside, and prescribe antibiotics to let me go for infusion after the operation.

I still can't forget the taste of surgery, it really hurts! The way I came out of the operating room can really be described as "tears flowing on my face", with a handful of snot on my face, which is simply the scene of social death.

The bone marrow was not diagnosed, but the redness and swelling around the needle hole helped the doctor find the cause of my illness

After the operation, I was alone in the injection room 丨 Author provided the picture

The cause of the low-grade fever cannot be found

Could it be tuberculosis?

After graduating from college, I successfully entered graduate school and started a new life.

I majored in computer science, the pressure is relatively high, often anxious to insomnia at night to one or two o'clock. What followed was a mouth ulcer of crazy revenge on me.

The ulcer that grew next to my throat made me have trouble swallowing at one point. I still thought it was "on fire", so when I came home for the holidays, everyone else ate big fish and meat, and I only dared to eat light vegetables and antibiotics.

Soon it will be 2020. Because of the epidemic, I can't go out every day at home to study, do projects, hold meetings, play mobile phones, and I don't exercise much, and I lack exercise even more. Although I eat vegetables every day, my mouth ulcers still recur, and I can't eat well, so I am losing weight day by day.

During this time, I even had genital ulcers. At the time, I suspected that not exercising and eating well caused a decline in immunity, as well as a change of aunt towel caused by not adapting.

By June, I was back at school because I was going to do a project. After returning to school, I had symptoms of cough and low fever, and after arriving at the school hospital, I was immediately detained for nucleic acid testing with fever, and also did treatment such as atomization and antibiotic infusion, but the symptoms never improved, and finally the school doctor suggested that I go to the big hospital to continue to treat.

So I went home and was admitted to the respiratory medicine department of a top three hospital in the city, and did a lot of tests, including bone marrow punctures, but nothing was abnormal. I also had mouth ulcers during this time.

At that time, in the circle of friends, my friends were all outdoors, while I was lying in the hospital, with needles in my hands, surrounded by grandmothers and grandfathers. I was very miserable and felt why I was so young, but I could only lie in a hospital bed and could not go anywhere. At this moment, I truly felt the preciousness of health and life.

The bone marrow was not diagnosed, but the redness and swelling around the needle hole helped the doctor find the cause of my illness

Infusion in the city hospital 丨 Author courtesy of the author

I have been having a low-grade fever and my weight has dropped from about 110 pounds to 100 pounds, but I have not found the cause. The city hospital considered that I might be TB and gave me experimental anti-TB drugs, but to no avail. Finally, at the suggestion of my family, I was discharged from here and prepared to go to a famous local tertiary hospital for continued treatment.

While waiting for the doctor, I had a genital ulcer again, so I went to the provincial women's and children's hospital for examination, and the results were normal (after all, I never had sex), and the doctor only prescribed some oral antibiotics and gynecological lotion.

Fever and ulcers are all right

Gaining weight is nothing

When I came to the respiratory department of a famous hospital, the doctor looked at the results of the previous examination, judged that I was not tuberculosis, and suggested that I be hospitalized for observation.

On the third day of hospitalization, a doctor from the Rheumatology and Immunology Department came to consult. The doctor looked at the place where I had pumped my bone marrow a few days ago, found that there was some redness around the needle hole, looked like a pimple, and then decided that I was "Behcet's disease." It was only later that I learned that this was one of the most important features of Behcet's disease: the needle prick reaction. My recurrent mouth and perineal ulcers are also typical manifestations of this disease.

After the diagnosis, the doctor prescribed me symptomatic drugs, the most important of which were glucocorticoids, which may make people fat with long-term use. After taking the medicine, my low-grade fever subsided, and I no longer coughed, so I was discharged from the hospital, and the doctor also instructed me to come to the hospital every month for a follow-up examination.

So I began the long process of medication. In the first few months of the medication, I felt for the first time how happy it is not to have mouth ulcers for a long time. Although I gained a little weight after taking glucocorticoids, I was still very happy, compared to health, what is gaining weight.

It was almost a year like this. One day, my hip joints on both sides began to hurt violently, and I was even woken up at night, and I was a little limp during the day. I immediately went to see an orthopedic surgeon and had an MRI of my hip.

The doctor looked at the film and said that I had a hydrocephalus in the hip joints on both sides, considering that it was synovitis caused by Behcet's disease. And I've been taking hormones for almost a year, so I'm also at risk of necrosis of the femoral head, so I recommend I go to a big hospital to see it again.

The bone marrow was not diagnosed, but the redness and swelling around the needle hole helped the doctor find the cause of my illness

Hip MRI results 丨 Author courtesy of the author

At that moment, my mentality collapsed again, I never knew that hormones could also cause necrosis of the femoral head, I began to look up the Internet... The Internet says that osteonecrosis of the femoral head can be disabling, unable to walk, and requires joint replacement. My tears swirled in my eyes, I was still so young, I still wanted to travel around the world, I was disabled? I admit I panicked.

The orthopedic surgeon said that this situation should be rested, so I lay at home for almost a month, and it was indeed better, although it was still faintly painful, but it seemed that there was no problem in walking.

I am still actively in treatment.

Mouth ulcers are all too common

But not necessarily a minor illness

Many people like me, think that mouth ulcers are small diseases, spraying will be good, but long-term mouth ulcers must be taken seriously! Behcet's disease is rare and the symptoms are not typical, there are very few online popular science videos, and many non-specialist doctors are not particularly familiar with this and are not easy to diagnose.

I was lucky enough to get prompt treatment before I had a serious problem. I heard that some patients have diseases that affect the eyes, and after not seeing, they first think of going to the ophthalmology department, rather than the rheumatology and immunology department, and the treatment before the diagnosis of Behcet disease does not cure the root cause, so that some people are unfortunately permanently blind.

Behcet patients take the drug for a long time and the price is not cheap. For example, my own medical expenses are now close to 1500 yuan per month, and most of the reviews are to go to the outpatient clinic, and the drugs prescribed are basically self-funded, which is really a big expense.

Some people say that Behcet's disease is not a dead cancer, I think it is not so exaggerated, early detection and early treatment, positive treatment, in fact, and normal people are not much different. Eat, drink, go out and walk around, and we'll all get better in the end

Doctor reviews

Zhang Sheng school | Attending physician of the Department of Rheumatology and Immunology, the Second Hospital of Shanxi Medical University

Behcet's disease, also known as Behchet's syndrome, is a Silk Road disease (most commonly found in the Silk Road region from the Mediterranean to China). It is a chronic and recurrent autoimmune disease with vasculitis as the basic pathological change, mainly manifested as recurrent mouth ulcers, genital ulcers, ophthalmic uveitis and skin damage, and can also involve peripheral blood vessels, heart, joints, gastrointestinal tract, lungs, kidneys, nervous system and other organs.

The prevalence of the disease in China is 14/100,000 people, the age of onset is mostly 15 to 50 years old, the incidence of men and women is similar, but male patients are more likely to involve important organs, and the prognosis is poor.

Mouth ulcers are the most common symptom of the disease, but as the authors say, simple mouth ulcers are often mistaken for "on fire" or "lack of vitamins" and are not taken seriously. Patients often use "anti-inflammatory drugs" or drugs that promote mucosal repair on their own, and even feel that "long-term illness has become a doctor" and "habit has become natural" without further examination.

In fact, if you have oral ulcers 3 or more times a year, and there are 1 to 2 unexplained refractory inflammations in various parts, you should be highly vigilant against Behcet disease.

Behcet's disease has the characteristics of "total mucosal ulcer", in addition to the oral mucosa, patients will also have esophageal, gastrointestinal, perineal mucosal ulcers, which are easily misdiagnosed by gastroenterology as inflammatory bowel disease, or mistaken by gynecology and dermatology as sexually transmitted diseases.

In addition, uveitis of the eye is also one of the mucosal lesions. Patients may suddenly have symptoms such as vision loss and floating debris in front of them, and repeated episodes of the disease can cause macular atrophy, optic nerve atrophy and glaucoma, resulting in irreversible vision loss.

On skin lesions, aseptic abscesses are common skin changes in Behcet's disease. This is the case with the "pustules" on the author's face and the "pustules" underarms that appear before graduating from college. However, sterile abscesses can also become bacterial abscesses secondary to bacterial infection due to decreased skin resistance.

In addition, the needle prick reaction that occurs after bone marrow puncture is also a specific manifestation. Acupuncture refers to the appearance of a red maculopapular rash the size of a grain of rice on the skin 12 to 48 hours after needle pricking under sterile conditions, as described by the author: the area around the pinhole is red and swollen, like a pimple. These two manifestations of the skin are mainly related to skin hypersensitivity and subcutaneous vasculitis.

50% of patients with Behcet's disease have joint pain, often asymmetrical intermittent, non-erosive peripheral enlargement, mid-joint involvement, such as hip pain in the authors.

When this symptom occurs, treatment with NSAIDs and colchicine may be required in the acute phase, or glucocorticoids injected into the articular cavity, and immunosuppressants such as methotrexate, azathioprine, or TNF-α antagonists may be required in the chronic phase.

These drugs have certain side effects, so doctors will monitor possible adverse reactions when giving drugs to patients, and strictly grasp the contraindications.

In the treatment of Behcet's disease, glucocorticoids can quickly inhibit inflammation, prevent irreversible organ damage, and delay the progression of the disease, so the treatment of Behcet's disease is inseparable from hormones. However, the presence of side effects such as full moon face, high blood pressure, high blood sugar, low immunity, necrosis of the femoral head, osteoporosis, etc., makes many people feel "hormones" frightened, but we can't choke on food because we are afraid of these side effects.

When doctors recommend glucocorticoids, patients need to understand that without hormones, the disease can be life-threatening if it progresses to the point where important organs are affected. In contrast, hormonal side effects that can be prevented and treated are less important. On the other hand, when the disease has remissioned to a certain extent, the hormone can be reduced regularly. At the same time, studies have shown that moderate exercise can also help control the disease and reduce the amount of hormones.

Behcet's disease is not so terrible. As long as you face it positively and follow the doctor's advice, patients can have a wonderful life like others.

Sharing personal experience does not constitute a diagnosis and treatment recommendation, can not replace the doctor's individual judgment of a specific patient, if you need to go to a regular hospital.

Author: Chenguang

Editors: Ziyi, DaiTian Doctor

The bone marrow was not diagnosed, but the redness and swelling around the needle hole helped the doctor find the cause of my illness

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