In early April 2019, her mother, who had worked for most of her life, finally relaxed, and at the age of 55, she bought vegetables, did housework, and cared for her grandchildren every day, living a simple and comfortable life that she had just started.
One day, she vaguely felt that her lower back and back were a little sore, and she didn't care at the time, and when she walked in the neighborhood, she also greeted the neighbors as usual, complaining about her elderly body and naughty grandson.
At that time, she could not imagine that a rare lesion was brewing in her body.
It only took 8 days
The mother went from occasional low back pain to paralysis
On April 4th, my mother felt unwell for the first time. At first she only had an occasional bout of pain in her lower back and back, and the next day she woke up, she began to feel a faint tingling and fever in her legs. She told her family about her back pain, which everyone thought might be caused by an old disease in her gallbladder.
On April 6, my mother had more pain in her back and legs, and everyone noticed that her shoulders were a little oblique and her gait was somewhat abnormal. When she talked to people in the fitness area of the community, several elderly people also complained about their low back pain, and said that she must be herniated lumbar disc, and it was recommended to go to the hospital to see an orthopedic department.
After taking the film at the hospital, the orthopedic doctor found that the mother did have mild lumbar bone hyperplasia and lumbar disc herniation, and recommended physical therapy.
Since the 7th, my mother has been going to the hospital every day for treatment, and has made the bed board at home hard. She thought to herself that physical therapy was slow to work, and that if she endured some more, insisting on treatment would always improve.
But as the three days passed, her symptoms became more and more severe. On the afternoon of the 11th, she had her first urinary incontinence. When she woke up in the middle of the night, she lost the ability to control her physical activity and collapsed consciously next to the toilet in the bathroom.
When the sky was dark, the family drove straight to the provincial capital with their things. At the bustling hospital gate, the mother was carried into the emergency room by her brother. At this point, our family's fight against this rare disease has begun.
Only one medicine took 7 days to spend 40,000 4
This rare disease became a disaster
On 13 April, her mother was initially diagnosed with acute myelitis by the provincial hospital and transferred to the Interventional Department of Encephalopathy.
The hospital's preliminary diagnosis 丨 Author courtesy of the author
Doctors say the mother's serum and cerebrospinal fluid need to be sent to a biology company in Beijing for immunological testing to determine whether it is simple acute myelitis or more complex optic neuromyelitis.
My mother had been hospitalized several times for common diseases such as gallstones, but we didn't know exactly if there was a problem with her immune system, and any previous illness and hospitalization had not been as dangerous as this time.
The mother's onset was acute and the symptoms were severe. At that time, she was conscious, completely paralyzed, more severe below the chest, and did not feel anything, could not control the bowel movements, and needed to insert a urinary catheter for 24 hours.
Doctors gave the mother a large dose of glucocorticoid shock according to the usual treatment of acute myelitis, and combined it with other nutrient nerve drugs.
In addition to this, the mother also used immunoglobulins that were expensive and could only be paid for out of pocket. This drug a small vial of 50 ml, it takes 630 yuan, 10 bottles per day, the mother lost for 7 days, costing 44,100 yuan.
At this time, we also received an immunological test report that the serum body aquaporin 4 antibody (AQP4 antibody) is positive, combined with the mother's symptoms, can be diagnosed as optic nerve myelitis spectrum disease (NMOSD).
Serum AQP4 antibody test is positive 丨 Author courtesy of the author
Myelitis optic nerve was included in the First Rare Diseases Catalogue in 2018, a rare disease of the nervous system with a low presence in the public eye. Since then, the disease has also become a disaster in the mother's life.
Father set a timetable
3 hours of treatment for mothers per day
The treatment in the acute phase prevented the further deterioration of the mother's condition, but had little effect on the recovery of physical functions, and the mother was still paralyzed in bed, unconscious, and unable to control defecation. Doctors have repeatedly emphasized that this disease is easy to recur, and having this disease means that from now on, it will be almost lifelong treatment and lifelong exercise.
The father's bedside task was extremely difficult. The mother received infusions and treatment almost 24 hours a day. At this stage, the mother's rehabilitation training and nursing need to be carefully completed by the father, and if you are not careful, a series of complications such as pressure sores and blood clots will follow.
They set a schedule, and my father gave my mother hot compresses, massage, leg lifting, and turning over three times a day in the morning, middle, and evening, one hour at a time. In addition, my father had to take time out during the day to buy food, and at night he would hold up a folding bed next to the hospital bed or in the corridor to take a nap.
In May 2019, my father helped my mother in the hospital to do turnaround training 丨 Author courtesy of the author
Physiotherapy is 20 minutes each time and costs 100 yuan. "I observed the physical therapist's movements, secretly memorized them in my heart, and then started doing it myself, 3 hours a day, and I could do more movements, which was very cost-effective." This is my father's experience.
Although the doctors in the provincial city are conscientious and conscientious, after all, they rarely treat such patients, and they are also a little uncertain when taking drugs. So I was in Beijing and immediately began to seek guidance from the famous top three hospitals here.
When I opened the registration platform of "Jingyitong" on my mobile phone, I found that in Xuanwu Hospital, which has the most cattle neurology department, there are 48 sub-specialty outpatient clinics in the department of photoneurology.
I went to the special outpatient clinics of Tiantan Hospital and Xuanwu Hospital to consult on behalf of my mother. The experienced doctor affirmed our current diagnosis and made some suggestions based on the current treatment, and the doctors at the home hospital also made some adjustments to the treatment plan according to these recommendations.
I can feel the pain
Instead, it became a gratifying thing
By May, my mother's urinary disorder was still not progressing, but her consciousness seemed to have recovered somewhat, and she could feel tingling and burning sensations in her legs. At this time, being able to feel the pain becomes a joyful thing.
Father's accompaniment was as usual, and they kept insisting. Slowly, the mother's hormone dosage has been reduced to a dose that can be taken orally, and there is no need to continue hospitalization.
On May 7, the mother was transferred to the Provincial Rehabilitation Centre for rehabilitation training. In this way, the mother, who is still inserted with a catheter, has entered another difficult stage.
The cost of daily rehabilitation training is still very large, including various auxiliary equipment exercises, physiotherapy, etc. We knew this was not the place to stay, and we hoped that my mother would regain her sense of urination and urinary catheters before she returned home.
Nurses at the next bed and patients with the same disability said it would take at least a few months to recover to this point, and some people even stayed in the rehabilitation hospital for several years without recovering.
But it seems that some miraculous luck has taken care of it, and it is also likely that the father's careful and uninterrupted nursing and rehabilitation training has played a huge role, and the mother's urinary function has begun to improve a week after admission, and in the following days she slowly regained consciousness and then removed the catheter.
In late May, when the days of staying in the hospital finally came to an end, my mother returned home in a wheelchair.
The cost of rehabilitation
It's extremely painful "spicy and hot"
After returning home, the road to recovery is still very difficult, and the only thing my mother can do is to rely on willpower and continue to exercise non-stop every day with the company and help of her father. At this point, they have no choice but to force their bodies to regain their senses and control.
Although the mother's urinary and stool function has been partially restored, it is still far from self-control, and diapers and urine pads are all necessities. My father learned more rehabilitation movements and means in the rehabilitation hospital, and he still used a set of strict movements as a mother massage and auxiliary exercise every morning, middle and evening, and never stopped.
With their efforts, the mother's body gradually regained its strength. As things get better, so does their daily training. At first, the father assisted the lying mother to do the leg lift and other movements, then turned over, got up, climbed on the bed, stood against the wall, until standing, and then trained himself.
The power of auxiliary movement slowly shifted from father to mother. By June and July, my mother was able to get off the ground on her own with the help of crutches, and used this to force herself to use the toilet regularly and exercise the urinary function.
The sensations in the mother's body were gradually recovering, but with it came a gradual increase in numbness and pain. Although the harvest of progress must come at a cost, this brought her great pain and torment, and even devoured the insignificant joy that the body's motor function was gradually recovering.
The mother's legs, back, waist and abdomen would experience lightning spasms, convulsions, burning and numbness without warning, dozens of times a day. Sometimes it would suddenly flare up while the family was eating, and her flushed face, spasmodic body, and incontinent urination made her miserable and ashamed.
Doctors say this is a normal phenomenon in the recovery process, and only in severe cases can be combined with some anti-epileptic drugs to control symptoms. These drugs can indeed alleviate some symptoms, but they also bring side effects to mothers, such as constipation, which makes it more difficult for mothers with urinary and stool disorders to defecate.
"My poor old mother, whose flesh was stained with sickness, twisted and convulsed and convulsed in despair, and there was no sleep in the night, and the pain flowed like fire, and the waist, legs, and so on were not spared. Another old man crouched on the edge of the bed, trying to use the power of the earth to stabilize her remnants; his brow furrowed, single-minded, until he felt tears fall from the back of his hand, and the line was broken. "I wrote down words in despair.
My brother was looking for help on the Internet, and the patients who had been ill for many years in the patient group expressed deep feelings for this symptom, and jokingly called it "spicy and hot".
Patients jokingly call this symptom "spicy and hot" 丨 Author courtesy photo
"I can't imagine such a torturous disease in this world, and sometimes I really wonder why it doesn't kill me directly." Mother often said such things with tears in her eyes. But even so, she did not give up on herself, and the rehabilitation action never stopped.
I think of what the doctor said during the consultation that many patients often suffer from mental illnesses such as depression due to long-term pain, which makes the whole situation worse.
Mothers need to take many drugs for a long time, the main ones are glucocorticoids and immunosuppressants. Due to the side effects of hormones, supplements such as calcium tablets are also supplemented. Immunosuppressants are expensive, need to be purchased by themselves, and there is a risk of side effects such as affecting liver and kidney function, and it is necessary to go to the hospital regularly to check the corresponding indicators.
At the time of the re-examination in June, the lesions in the mother's MRI had basically disappeared, but complications such as thrombosis and urinary tract infections were detected and needed to be treated with medication.
The mother's body was emaciated, but her face became a fat "hormone face".
Some hospital archives since the mother's illness 丨 Author courtesy of the author
Optimistic and tough enough
The haze will leave you
After a few months, my mother's body recovered faster and better, and most fortunately, her "spicy hot" symptoms began to lessen. She can even push her crutches out for a walk and tell everyone, "I'm starting to enjoy myself again!" ”
The mother is getting better day by day, but there is a heavy burden that always weighs on the family's heart, that is, doctors and those medical literature say that most of the diseases of the optic nerve myelitis spectrum will recur, and will recur many times.
If such a situation were to happen again, the pain and hardship would be unimaginable. Even if the drug treatment is still effective, it will be difficult for us to bear it again, and the human spirit will be completely destroyed.
But my mother's unexpected recovery gave us greater confidence. During that time, I looked for a lot of information about rehabilitation, among which Norman Dauich's "Reshaping the Brain, Reshaping Life" and "Awakening the Brain" gave me many positive examples. My father and I figured out ways to encourage my mother and help her regain her body's function.
My mother's daily exercise routine was never interrupted, and the uncomfortable feelings in the recovery process were alleviated, but they almost never stopped. She seemed to have gotten used to physical pain and slowly accepted the company of illness. The disease had crushed her, but she overcame it little by little, and in the process reborn her body.
The mother is like a baby, from almost complete paralysis to learning to turn over and stand; from climbing to walking on crutches, and then leaving the crutches to learn to walk independently step by step. Illness has made her temperament mild, she also understands what it means to live in the moment, and she knows how to cherish and be grateful.
Later, in 2020, the sudden outbreak of the epidemic also made her more understand her misfortune, and she no longer asked why she had such a disease.
She continued to complete her daily tasks like a clock, her health getting better and better, almost completely restored to her once comfortable living state, and even cooking and doing housework, and we pretended to forget that there was a recurrence of the "time bomb".
The antibody turns negative
Mother didn't have to take any more medicine
In March 2021, we brought our mother to Beijing for follow-up consultation with a nervous mood, and the doctors of the special needs clinic of Tiantan Hospital saw the mother's situation and felt that the recovery effect was very good, and we could consider starting to further reduce the hormone, and then see if the drug could be stopped after half a year according to the situation.
Another serendipity is that in this serum antibody test, the results of her AQP4 antibody have actually turned negative.
AQP4 antibody results for March 2021 丨 Courtesy of the authors
Around August 2021, when the doctor smiled at her and said, "No more medications," we couldn't believe our ears.
Until now, my mother often felt unwell, and tingling and pain were commonplace, but I think this was the best ending. To introduce the idea of meditative mindfulness, imagine this constant discomfort as if the body is reminding you to perceive and move.
Looking back on what I've been through in the last three years, I'm genuinely proud of my parents. The father's loyalty and unremitting dedication as a husband, the mother's tenacity in the face of the impermanence of life and the hope for life, together change the situation that was considered hopeless.
I hope that my mother's unfortunate and fortunate experience can inspire more patients and all those who are in difficulty. In the face of the seemingly helpless situation in modern medicine, the only thing we can grasp is our own mentality and the way we get along with the disease. Hope and perseverance are especially valuable at this time.
Doctor reviews
Yang Liu | Neurologist, Beijing Friendship Hospital, Capital Medical University
Optic nerve myelitis spectrum disease (NMOSD) is an inflammatory demyelinating disease of unknown etiology, idiopathic central nervous system, and immune-mediated.
The so-called "myelin sheath" is a layer of "protective clothing" wrapped around the axons of central nervous cells, which plays a role in protecting, insulating and conducting information. The myelin sheath is specifically destroyed and lost by the patient's own immune system, causing corresponding clinical symptoms.
This disease tends to occur in young adults, mostly women, clinically mostly with severe optic neuritis and longitudinal extension of longitudinal segment transverse myelitis as the main clinical features, mostly manifested as vision loss, limb pain, numbness and weakness. The recurrence rate and disability rate of this disease are high, more than 90% are multi-time phase diseases that will recur, of which 40% to 60% recur within one year and 90% within 3 years.
The patients in this article are predominantly spinal cord involvement, including motor, sensory, urine, and bowel movement disorders, and there is no mention of optic nerve damage. And the patient's onset is nearly 3 years ago, and there is no recurrence, so the patients in this article are more likely to be long-segment transverse myelitis of the unipolar course, combined with specific markers in cerebrospinal fluid and blood, that is, the AQP4 antibody mentioned in the article, which can be classified as a spectrum disease of optic neuromyelitis.
Many neurologists will choose to go to the orthopedic department when they initially have symptoms of lumbar discomfort, as in this article, and experienced orthopedic doctors will recommend them to the neurology department for related tests, including AQP4 antibody tests and related MRI.
In terms of treatment, in the acute phase of the disease, the goal is mainly to reduce symptoms, shorten the course of the disease, improve the degree of disability and prevent complications, and the common means are intravenous corticosteroids.
The patients in this paper were treated with hormones for shock therapy soon after admission, which is conducive to the recovery of nerve function in the short term, and the subsequent gradual reduction of hormones is also to improve the degree of disability and prevent aggravation or recurrence.
Patients with poor hormonal responses can choose the expensive immunoglobulins mentioned in the text, usually five days for a course of treatment. In hospitals with conditions, plasma exchange can also be performed in patients with severe damage.
Some patients, especially those who are positive for AQP4 antibodies like those in the article, need to take a long-term combination of low-dose hormones and immunosuppressants after the acute phase, with the goal of preventing recurrence and reducing the accumulation of neurological dysfunction caused by recurrent episodes of the disease.
On April 30, 2021, satlizumab was approved in China for the treatment of the optic nerve myelitis spectrum disease in the older age of 12 years of age, which brought new therapeutic dawn to patients.
The "spicy hot" jokingly called in the text is crampy spasms, which are easy to appear during the recovery period, and there are corresponding drugs that can be relieved, such as carbamazepine, gabapentin, clonazepam and so on.
Due to severe transverse damage to the optic nerve and spinal cord, the disease is easy to cause blindness or paraplegia in the early stages, so rehabilitation treatment in the later stages is very important. Insisting on rehabilitation exercises like the patients in the article is of great help to the recovery of nerve function.
Most patients are prone to recurrence, and any episode may bring irreversible damage, so patients should pay attention to seeking medical attention in time when vision and spinal cord symptoms appear, and inform the doctor of the medical history and whether the symptoms are the first.
Patients with this disease need long-term follow-up, adhere to the doctor's advice to take drugs to help prevent the recurrence of the disease, do not increase or decrease drugs without authorization. For patients in this paper, because it may be a unipolar course and the AQP4 antibody turns negative, it may be considered to discontinue the drug under the guidance of a doctor in the case of good symptom control.
At the same time, the cooperation and encouragement of family members also help patients to recover physically and mentally.
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: Fruit pulp
Editors: Ziyi, DaiTian Doctor