A Personal Journey of Diagn, Treatment, and Financial Struggles
Transverse Myelitis is a rare and complex disease that affects the spinal cord and can cause paralysis. Unfortunately, my mother was one of the few unlucky individuals who fell victim to this disease. Her story is a testament to the importance of early diagnosis and proper treatment for transverse myelitis and the financial struggles that patients and their families may face in obtaining it.
My mother’s journey with transverse myelitis began when she suddenly lost the ability to stand on her feet. The doctors at the hospital where she was initially admitted were unable to diagnose the cause of her symptoms, and it was only after a referral to a specialized orthopedic doctor that her condition was finally identified as transverse myelitis. Unfortunately, by then it was too late for her to fully recover with physiotherapy alone, and my family faced a long and difficult road ahead as we struggled to manage her condition and the financial burden that came with it.
The costs of treatment, including diagnostic tests, medications, and rehabilitation, were significant and added to the stress of managing my mother’s condition. In addition, the lack of insurance coverage for certain treatments or therapies further exacerbated the financial burden on our family. My mother’s condition also required ongoing care and support, including home health aides, assistive devices, and modifications to our home, all of which added to the financial burden.
The emotional and mental toll of managing finances while also trying to care for a loved one with a debilitating disease cannot be overstated. My family had to make sacrifices, such as selling land properties and taking loans from various sources, in order to pay for my mother’s treatment.
In this blog post, I will be sharing my personal experience of the financial struggles that my family faced while trying to get my mother the treatment she needed for transverse myelitis. I will also be providing resources and information for those who may be facing similar financial struggles. It is my hope that by sharing my mother’s story, I can raise awareness about the financial burden that transverse myelitis can have on patients and their families, and the importance of early diagnosis and proper treatment in order to reduce that burden.
My Mother’s Struggle with Transverse Myelitis
My mother’s journey with transverse myelitis began with a visit to the ICU at CMH. She was under observation as the doctors tried to determine the cause of her symptoms through various diagnostic tests such as knee X-rays and MRI scans. Despite these efforts, the cause of her condition remained elusive and she was eventually discharged from the hospital.
It wasn’t until my mother was visited by a specialized orthopedic doctor at Lab Aid in Uttara, that the true cause of her paralysis was identified. The doctor prescribed physiotherapy treatment, and it was only after further testing and an X-ray of her spinal cord that the diagnosis of transverse myelitis was confirmed. And she was again referred to CMH.
The diagnostic process was filled with challenges and setbacks for my mother. The back-and-forth nature of her diagnosis, and the initial focus on other potential causes such as knee problems added to the emotional and financial burden on our family. We had to continue to pay for care and treatment without a clear understanding of my mother’s condition.
The hospital’s initial focus on knee X-rays and other diagnostic tests that did not pertain to her condition caused further frustration and added to the delay in her diagnosis. The lack of collaboration between the hospital and specialized centers, such as CRP at Savar, that specialize in the treatment of paralyzed patients, further hindered my mother’s diagnostic process and treatment.
As I reflect on my mother’s journey with transverse myelitis, I can’t help but think about the importance of early and accurate diagnosis for patients with complex and rare diseases like this. The lack of modern medical technology and specialized care available in Bangladesh made it difficult for my mother to receive an accurate diagnosis in a timely manner, and ultimately, it had a significant impact on her treatment and prognosis. I hope that through sharing my mother’s story, we can raise awareness about the importance of early and accurate diagnosis for patients with transverse myelitis and other rare and complex diseases.
My mother’s treatment for transverse myelitis included physiotherapy, regular blood checkups, and diabetes management, along with 24-hour service-based care with the help of expensive caregivers. However, despite these efforts, her condition remained unchanged and her health continued to deteriorate.
The challenges my mother faced in obtaining proper treatment were numerous, with the lack of modern medical technology and specialized care available in Bangladesh being the most prominent. This made it difficult for her to receive the level of care that she needed to manage her symptoms and improve her quality of life.
Rehabilitation and long-term therapy were also a part of my mother’s treatment plan, but these efforts were not enough to improve her condition. The lack of specialized care and resources in our country made it difficult for her to receive the level of care that she needed.
The doctors of CMH referred to the sensitive X-ray of the spinal cord and identified the cause of her paralysis symptom, which was transverse myelitis. However, it was too late to get my mother cured by providing physiotherapy treatment alone. Unfortunately, there were no such modern medical technologies through which my mother could be treated, and afterward, they decided to discharge my mother, completely surrendering to any further responsibilities due to any of her health complications related to this disease. My mother had to accept this mismanagement to identify the reason for the state of her paralyzed life, which added to the emotional, physical, and financial burden on our family.
The lack of proper healthcare infrastructure in our country made it difficult for my mother to receive the level of care and treatment that she needed. This further highlights the importance of advocating for better healthcare for patients with transverse myelitis and other rare and complex diseases, and the need for more resources and financial assistance for patients and their families.
My mother’s treatment for transverse myelitis came with a heavy financial burden for our family. The cost of caregivers, physiotherapy, medication and other expenses added up quickly, leaving me struggling to bear the cost. I had to make sacrifices in order to pay for her treatment, including selling off land properties and taking loans from personal sources and organizations like banks and NGOs.
The interest on these loans continued to increase over time, adding to the financial burden. This added to the stress and emotional toll of caring for my mother, as I was constantly worried about how I would be able to pay off these loans. Despite the financial assistance programs and resources that were available, they were not enough to cover all the expenses. The lack of proper healthcare infrastructure in Bangladesh added to the financial burden, making it difficult for my family to afford the necessary treatment for my mother’s condition.
The Impact of Covid-19
The outbreak of Covid-19 in Bangladesh in 2020 made it even more difficult for my mother to receive proper treatment and care. The pandemic caused widespread disruptions to healthcare systems and made it difficult for patients like my mother to access the care they needed.
My mother faced additional challenges during her treatment due to the restrictions on movement and access to healthcare facilities that were put in place to slow the spread of the virus. These restrictions made it difficult for her to receive the regular treatment and care she needed, and her prognosis was further hindered by the disruptions caused by the pandemic.
The fear of contracting the virus also added to the emotional and physical burden on my mother and our family. We were constantly worried about her safety and well-being, and the lack of proper protective equipment made it difficult to ensure her safety while receiving treatment. The pandemic added an additional layer of stress and anxiety to an already difficult situation, making it even more challenging to care for my mother during this time.
Coping with the Loss
As my mother’s condition continued to deteriorate despite the efforts made to provide her with the best care, she eventually passed away in 2020. Her death was a difficult and painful loss for our family and it was difficult to accept that all our efforts couldn’t save her.
The emotional and physical toll that her illness and death had on our family is immeasurable. The constant care and treatment, the financial burden, the emotional stress, and the fear of losing her took a toll on us. We continue to struggle with her loss, and it is a constant reminder of the struggles that she faced during her illness.
The importance of advocating for better healthcare for patients with transverse myelitis and other rare and complex diseases cannot be overstated. The lack of resources and financial assistance for patients and their families is a major problem in Bangladesh. My mother’s story highlights the need for better healthcare infrastructure and specialized care for patients with complex and rare diseases like transverse myelitis.
I hope that by sharing my mother’s story, readers will become more aware of this disease and the struggles that patients and their families face in obtaining proper treatment and care. I urge everyone to take advantage of available resources and financial assistance programs and to advocate for better healthcare for patients with transverse myelitis and other rare and complex diseases. Together, we can make a difference in the lives of patients and their families.
What causes transverse myelitis?
The cause of transverse myelitis is often unknown, but it can be caused by a number of factors, including
- Autoimmune disorders: This occurs when the body’s immune system mistakenly attacks and damages the spinal cord.
- Infections: Certain viral or bacterial infections can lead to transverse myelitis, including herpes simplex, varicella-zoster, and West Nile virus.
- Neuromyelitis Optica: This is a rare autoimmune disorder that affects the spinal cord and optic nerves.
- Post-viral or post-vaccination: Transverse myelitis can occur as a complication after a viral infection or vaccination.
What are the symptoms of transverse myelitis?
Symptoms of transverse myelitis can vary depending on the location and severity of the inflammation, but may include:
- Weakness or paralysis in the legs and/or arms
- Loss of sensation or tingling in the legs and/or arms
- Loss of reflexes
- Bladder or bowel dysfunction
- Pain in the back or neck
- Heat intolerance
How is transverse myelitis diagnosed?
Transverse Myelitis is a rare condition that can be difficult to diagnose. However, there are several tests and imaging techniques that can be used to confirm a diagnosis and rule out other underlying causes.
The first step in diagnosing transverse myelitis is a physical examination. During this examination, the doctor will look for signs of weakness, sensory changes, and reflex changes. They will also check for bladder and bowel problems, which are common symptoms of transverse myelitis.
Imaging tests such as magnetic resonance imaging (MRI) and computed tomography (CT) can be used to detect inflammation in the spinal cord. An MRI produces a cross-sectional view of the spinal cord, while a CT scan can be used to detect inflammation. These imaging tests can also provide clues to other underlying causes, such as multiple sclerosis (MS).
Blood tests can be used to rule out other disorders such as HIV infection and vitamin B12 deficiency. These tests can also be used to evaluate the levels of inflammation-related proteins in the blood.
In addition to these tests, transverse myelitis can be diagnosed based on clinical criteria, such as the rapid onset of symptoms, spinal cord involvement, and exclusion of other causes.
Transverse myelitis is a serious condition that requires prompt diagnosis and treatment. If you suspect you may have transverse myelitis, it is important to seek medical attention right away. With proper treatment, most people with transverse myelitis have at least partial recovery, with most recovery taking place within the first 3 months after the attack.
How is transverse myelitis treated?
Transverse myelitis is a serious condition that requires prompt treatment. Treatment options may include:
High-dose corticosteroids such as methylprednisolone are often used to reduce inflammation in the spinal cord. Other immunosuppressive medications may be used to prevent further episodes of transverse myelitis or to treat underlying conditions that may be causing the disorder.
Physical therapy can help individuals improve their strength, balance, and coordination, as well as help them to maintain flexibility and range of motion in the affected limbs.
Surgery is rarely needed to treat transverse myelitis. In some cases, surgery may be needed to remove a tumor or other lesion that is causing the disorder.
Prevention of future transverse myelitis episodes
There are several ways to reduce the risk of future episodes of transverse myelitis, including:
Vaccinations can help protect against infections that may trigger transverse myelitis.
Lifestyle changes, such as quitting smoking and reducing stress, may help reduce the risk of transverse myelitis.
Stress management techniques, such as yoga or meditation, may help reduce the risk of transverse myelitis.
Rehabilitative and long-term therapy
Physical therapy and other rehabilitative therapies can help individuals manage the effects of transverse myelitis and improve their quality of life. These therapies may include:
Occupational therapy can help individuals improve their ability to perform daily activities and regain their independence.
Speech therapy can help individuals improve their ability to communicate.
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How is transverse myelitis diagnosed?
The diagnostic process for transverse myelitis can be a complex and difficult one. In order to make a diagnosis, physicians will typically take a medical history and perform a thorough neurological examination. This will typically include a series of tests and imaging to confirm a diagnosis and rule out or evaluate underlying causes.
During a physical examination, a doctor will check for signs of weakness, sensory changes, and reflex changes in the limbs. They may also check for changes in bladder and bowel function, which can be common in transverse myelitis.
Imaging tests such as magnetic resonance imaging (MRI) can be used to produce detailed images of the brain and spinal cord. A spinal MRI will almost always confirm the presence of a lesion within the spinal cord, whereas a brain MRI may provide clues to other underlying causes, especially multiple sclerosis (MS). In some instances, computed tomography (CT) may be used to detect inflammation.
Blood tests may be performed to rule out various disorders, including HIV infection and vitamin B12 deficiency. Blood tests can also be used to measure levels of certain antibodies, which can indicate the presence of an underlying autoimmune disorder.
It is important to note that the diagnostic process for transverse myelitis can be difficult and may require multiple tests and evaluations. In some cases, a definitive diagnosis may not be possible. However, with the help of specialized doctors, the patient’s symptoms, medical history, and test results can be used to make a diagnosis and determine the best course of treatment.
How is transverse myelitis treated?
The treatment for transverse myelitis varies depending on the underlying cause of the inflammation, but generally includes a combination of medications, physical therapy, and surgery.
Corticosteroids, such as methylprednisolone, are the most commonly used medications to reduce inflammation and swelling in the spinal cord. They are usually administered intravenously in the hospital and then tapered off over several weeks. Other medications, such as immunosuppressants and immunomodulators, may be used to suppress the immune system and prevent further attacks.
Physical therapy is an important aspect of treatment for transverse myelitis, as it can help to improve muscle strength, coordination, and flexibility. Physical therapy may also help to prevent contractures, which are permanent shortening of muscles and tendons.
In some cases, surgery may be necessary to relieve pressure on the spinal cord, such as laminectomy, which involves removing a portion of the vertebral bone to create more space for the spinal cord. Surgery is typically a last resort and is only considered if there is significant compression of the spinal cord.
Prevention of future transverse myelitis episodes
Transverse myelitis is an unpredictable condition, and there is no guaranteed way to prevent future episodes. However, there are steps that can be taken to reduce the risk, such as managing underlying health conditions and making lifestyle changes.
Vaccinations, such as the flu shot, can help to prevent infections that can trigger transverse myelitis.
Maintaining a healthy lifestyle, including regular exercise, eating a balanced diet, and avoiding smoking and excessive alcohol consumption can help to reduce the risk of transverse myelitis.
Managing stress through techniques such as meditation, yoga, and deep breathing can help to reduce the risk of transverse myelitis.
Rehabilitative and long-term therapy
Rehabilitation and long-term therapy are important for managing the effects of transverse myelitis and improving the patient’s quality of life.
Occupational therapy can help patients with transverse myelitis to regain the ability to perform daily activities, such as dressing, grooming, and eating.
Speech therapy may be necessary for patients with transverse myelitis who have difficulty speaking or swallowing.
Mental health support
Mental health support, such as counseling, can help patients with transverse myelitis to cope with the emotional and psychological effects of the disorder.
What research is being done?
Current research on transverse myelitis is focused on understanding the underlying causes of the condition and developing new treatments. Researchers are studying various factors that may contribute to the development of transverse myelitis, including genetics, viral infections, and immune system dysfunction.
There are also several ongoing clinical trials testing new treatments for transverse myelitis, including medications, physical therapy, and stem cell therapy. These trials are aimed at improving outcomes for patients with transverse myelitis and ultimately finding a cure for the condition.
Some of the current research areas include:
Investigating the role of the immune system in transverse myelitis
- Developing new medications for transverse myelitis
- Examining the use of stem cells for treating transverse myelitis
- Exploring the potential of physical therapy and rehabilitation to improve outcomes for transverse myelitis patients
Future prospects for research on transverse myelitis include the development of more effective treatments, a better understanding of the underlying causes of the condition, and the identification of new risk factors and early diagnostic markers.
Where can I get more information?
There are a number of resources available for individuals seeking more information on transverse myelitis. These include:
Patient support groups
Joining a support group can provide individuals with a sense of community and a forum for sharing information and experiences.
There are a number of reputable medical websites that provide information on transverse myelitis, including the National Institute of Neurological Disorders and Stroke (NINDS) and the Transverse Myelitis Association (TMA).
Organizations such as the TMA provide support and information for individuals with transverse myelitis, as well as resources for healthcare providers.
Transverse myelitis can be a costly condition to manage, as it requires ongoing medical treatment, medications, and often, rehabilitation therapy. In addition, patients may require in-home care or may need to take time off work. These costs can put a significant financial burden on patients and their families.
Some of the financial challenges that patients and their families may face include:
Cost of treatment
The cost of treatment for transverse myelitis can include medications, physical therapy, and rehabilitation therapy. These costs can add up quickly and can be difficult for some families to afford.
Insurance coverage: Insurance coverage for transverse myelitis treatment may vary, and some patients may not have adequate coverage for their needs.
Financial assistance programs
There may be financial assistance programs available to help patients and their families with the costs of treatment, such as Medicaid or other government programs.
Patients and their families may need to find ways to manage their finances and reduce costs, such as cutting back on unnecessary expenses or finding ways to generate additional income.
Complications and Long-term Effects
Transverse myelitis can cause a range of complications and long-term effects, even with proper treatment. Some of the most common complications and long-term effects of transverse myelitis include:
Many people with transverse myelitis experience chronic pain, particularly in the areas of the body affected by the inflammation. This pain can be caused by nerve damage, muscle spasms, or other factors.
Spasticity is a condition characterized by muscle stiffness, spasms, and increased muscle tone. It is a common complication of transverse myelitis and can make it difficult to move, walk, or perform other activities.
Bowel and bladder dysfunction
Transverse myelitis can cause problems with the muscles that control the bowel and bladder, leading to incontinence, constipation, or other issues.
Fatigue is a common complication of transverse myelitis, and can make it difficult to perform daily activities.
Emotional and psychological effects
Living with a chronic condition like transverse myelitis can take a toll on mental health, leading to depression, anxiety, or other emotional or psychological issues.
It is important to note that these complications and long-term effects can vary widely depending on the severity of the transverse myelitis, the individual’s overall health, and the effectiveness of their treatment. People with transverse myelitis should work closely with their healthcare team to manage any complications or long-term effects that arise and to maintain the best possible quality of life.
Impact on Quality of Life
Transverse myelitis can have a significant impact on a person’s quality of life. The physical limitations caused by the condition can make it difficult for individuals to perform everyday tasks and activities. Additionally, the emotional and psychological impact of the condition can be significant, as individuals may struggle with feelings of isolation and depression.
The physical limitations caused by transverse myelitis can include difficulty walking, weakness in the arms and legs, and loss of sensation. These limitations can make it difficult for individuals to perform everyday tasks such as dressing, bathing, and cooking. Some individuals may require the use of mobility aids such as wheelchairs or walkers.
Emotional and psychological impact
The emotional and psychological impact of transverse myelitis can be significant. Individuals may struggle with feelings of isolation and depression as they adapt to their new physical limitations. They may also experience anxiety and fear about the future, as well as feelings of frustration and anger. It is important for individuals with transverse myelitis to have access to emotional and psychological support to help them cope with these feelings.
Social and occupational impact
The social and occupational impact of transverse myelitis can be significant. Individuals may experience difficulty participating in social activities and may struggle to maintain relationships. They may also experience difficulty returning to work or may require accommodations to continue working. These challenges can have a significant impact on a person’s quality of life, and it is important for individuals with transverse myelitis to have access to resources and support to help them manage these challenges.
Subtypes of Transverse Myelitis
Transverse myelitis is a rare and complex disease that can manifest in different forms. Some of the most common subtypes of transverse myelitis include:
- **Acute disseminated encephalomyelitis (ADEM)**—This is a rare disorder that causes inflammation of the brain and spinal cord. ADEM typically occurs after a viral or bacterial infection and can cause symptoms similar to transverse myelitis.
- Neuromyelitis Optica (NMO) — This is a rare disorder that causes inflammation of the optic nerves and spinal cord. NMO is typically characterized by recurrent attacks of optic neuritis and transverse myelitis.
3.** Recurrent transverse myelitis** — This is a subtype of transverse myelitis that involves recurrent episodes of inflammation and symptoms.
3. Acute flaccid myelitis — This is a rare disorder that causes inflammation of the spinal cord and can result in weakness or paralysis of the limbs, similar to transverse myelitis.
From my personal experience, my mother was diagnosed with transverse myelitis and her symptoms were consistent with the recurrent transverse myelitis subtype, as she had multiple episodes of inflammation and symptoms over time. However, due to the lack of modern medical technology and specialized care available in Bangladesh, it was difficult to accurately diagnose and classify her specific subtype of transverse myelitis.
It is important to note that the subtypes of transverse myelitis may have different causes, symptoms, and treatment options, and it is crucial for patients to receive an accurate and timely diagnosis in order to receive the appropriate care and treatment.
In conclusion, transverse myelitis is a debilitating condition that can have a significant impact on the lives of patients and their families. The diagnostic process can be frustrating and time-consuming, with a lack of clear answers and a delay in diagnosis adding to the emotional and financial burden on the family. The available treatments are limited, and the lack of proper healthcare infrastructure and specialized care in many countries can make it difficult for patients to receive the care they need.
The financial struggles that patients and their families may face in obtaining proper treatment for transverse myelitis are significant, and it is important for patients to be informed about the condition and available resources. It is also important to advocate for better healthcare for patients with transverse myelitis and other rare and complex diseases, and for more resources and financial assistance for patients and their families.
In my personal experience, the lack of proper medical technology and specialized care in Bangladesh made it difficult for my mother to receive an accurate diagnosis and effective treatment, and the delay in diagnosis added to the emotional and financial burden on our family. It is my hope that by sharing my mother’s story, readers will become more aware of this disease and the struggles that patients and their families face, and will be motivated to advocate for better healthcare for patients with transverse myelitis and other rare and complex diseases.
If you suspect that you or someone you know may have transverse myelitis, it is important to seek medical attention as soon as possible. For more information on transverse myelitis and available resources, please visit patient support groups, medical websites, and patient organizations.