What Is Transverse Myelitis?

Transverse myelitis is a long-term condition that causes inflammation in certain parts of the spinal cord. Technically considered a neurological disorder, it attacks and damages the insulating cell material covering nerve cell fibers (myelin).

Ultimately, the condition deteriorates enough of the nerve cell fibers found in the spinal cord to create a lasting and often permanent impact. It causes interruption to the messages that these nerves naturally send throughout the body. This disease is also a very painful condition leading to weakness in the extremities and abnormal sensations.

According to the Mayo Clinic, there are many different causes for transverse myelitis. Some of these include infections and immune system disorders, which compromise the health of the body’s tissues. It can also be caused by other illnesses categorized as myelin disorders, such as multiple sclerosis.


The Signs of Transverse Myelitis

Usually, this illness affects both sides of the body due to spinal cord damage. Sometimes, however, the symptoms appear on just one side of the body. According to the Mayo Clinic, common symptoms and signs include:

  • Bladder and bowel issues – This symptom can involve more frequent urination, incontinence, inability to urinate, and constipation.
  • Arm or leg weakness – In mild onset, individuals will experience heaviness in their legs, stumbling, or a noticeable foot drag. These signs can evolve into debilitating weakness or total paralysis.
  • Abnormal sensations – Numbness, tingling, burning, or cold sensations can be common for individuals with transverse myelitis. Many become very sensitive to contact with even their own clothing and may experience temperature fluctuation.
  • Pain – Often beginning in the lower back, pain may manifest as sharp stinging that shoots down the arms and legs.


When Should You See a Doctor?

If you start experiencing symptoms, you should call your doctor or seek out emergency health care.  Beyond transverse myelitis, many neurological disorders may present sensory problems, weakness, and bladder or bowel issues.


How Do You Get Transverse Myelitis?

Research has not yet determined an exact cause for transverse myelitis, but medical researchers have isolated some factors associated with the disease. For example, viral, bacterial, and fungal infections that attack the spinal cord show a strong link to later development of transverse myelitis.

“Viruses associated with transverse myelitis are:

  • Herpes viruses, including the one that causes shingles and chickenpox (zoster)
  • Cytomegalovirus
  • Epstein-Barr
  • HIV
  • Enteroviruses such as poliovirus and coxsackievirus
  • West Nile
  • Echovirus
  • Zika
  • Influenza
  • Hepatitis B
  • Mumps, measles and rubella

Other viruses may trigger an autoimmune reaction without directly infecting the spinal cord.

Bacterial infections that are associated with transverse myelitis include:

  • Lyme disease
  • Syphilis
  • Tuberculosis
  • Actinomyces
  • Pertussis
  • Tetanus
  • Diphtheria

Bacterial skin infections, gastroenteritis, and certain types of bacterial pneumonia also may cause transverse myelitis.”

There are also a variety of inflammatory illnesses linked to transverse myelitis. Some of these are:

  • Multiple sclerosis
  • Neuromyelitis optica (Devic’s disease)
  • Autoimmune disorders, such as lupus or Sjogren’s syndrome
  • Sarcoidosis


The Diagnosis of Transverse Myelitis

Determining the presence of transverse myelitis involves a variety of tests that may measure spinal cord inflammation, including an MRI, a lumbar puncture, or blood tests. An MRI can capture 3D images of soft tissues, revealing spinal cord inflammation.

Doctors use a lumbar puncture (also called a spinal tap) to search for abnormally high white blood cell count or immune system proteins that may indicate inflammation. Blood tests can measure the number of antibodies associated with the presence of this disease.


Treatment for Transverse Myelitis

According to the National Institute of Neurological Disorders and Stroke, there are a few therapies that target the signs and symptoms of this disorder. Some of them include:

  • Intravenous steroids – Steroids may help reduce inflammation within the spinal column
  • Plasma exchange – During this procedure, medical professionals take plasma out of the body and replace it with fluid that does not containing inflammatory antibodies
  • Antiviral medication
  • Pain medication
  • Medications to treat complications – Doctors often prescribe medications to treat muscle issues, urinary or bowel dysfunction, depression, or any other complications related to the disorder
  • Specific transverse myelitis medications – These medications are typically corticosteroids or immunosuppressants designed to reduce the possibility or frequency of attacks
  • Physical therapy for transverse myelitis – Therapy may improve strength and coordination. It can also help individuals with transverse myelitis to learn to effectively use adaptive equipment


Long-Term Effects of Transverse Myelitis

Some individuals living with transverse myelitis experience partial recovery, but prognosis depends on the cause and severity of the transverse myelitis episode.

According to N. Neurology:

About one-third of people with transverse myelitis fall into one of three categories after an attack:

  • No or slight disability.These people experience only minimal lingering symptoms.
  • Moderate disability.These people are mobile, but may have difficulty walking, numbness or tingling, and bladder and bowel problems.
  • Severe disability.Some people may permanently need a wheelchair and require ongoing assistance with daily care and activities.”


Treatment Costs for Transverse Myelitis

There are many variables to consider when measuring the overall costs of transverse myelitis treatment, including severity, length of time since diagnosis, and the potential for relapse. However, according to N. Neurology:

“Mean total costs in the 1-year post-index period were $48,378 for all patients and $88,410 and $20,309 for those with and without a relapse, respectively. Mean outpatient costs were $26,585 for all patients and $40,969 and $16,500 for those with and without a relapse, respectively”


Help Hope Live Offers Financial Assistance for Transverse Myelitis Patients

If you are dealing with the symptoms of this diagnosis as an individual or family, get assistance from Help Hope Live. Through community-based fundraising, our nonprofit organization is dedicated to helping those in need to raise funds for medical treatment costs associated with transverse myelitis care.


Which Costs Can Transverse Myelitis Fundraising Help With?

If you need financial assistance for transverse myelitis expenses, fundraising may be a helpful pathway. Fundraising with Help Hope Live can help you cover expenses such as:

  • Health insurance premiums, deductibles, and co-payments
  • Medications
  • Travel expenses for rehabilitation and treatment
  • Relocation or moving expenses related to the diagnosis (such as in the case of moving to be closer to a rehabilitation center or hospital for treatment)
  • Temporary housing due to relocation
  • Mileage, tolls, and parking fees for visits to rehabilitation center or hospital
  • Specialized wheelchairs and other durable medical equipment
  • Specially equipped vans and durable medical equipment
  • Home modification related to the diagnosis
  • Home health care services
  • Physical therapy and vocational rehabilitation
  • Experimental treatments


How Does Transverse Myelitis Fundraising Work?

The fundraising process with our nonprofit starts with a few simple steps:

  1. Complete a short campaign request at helphopelive.org/get-started/apply
  2. We will contact you if community-based fundraising is a possible option
  3. You’ll be paired with a Client Services Coordinator
  4. Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and much more


How Is Help Hope Live Different from GoFundMe?

Help Hope Live differs from GoFundMe by:

  • Verifying your medical need for complete donor confidence
  • Enabling donations that are tax-deductible
  • Providing one-on-one fundraising help
  • Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you)
  • Paying bills directly, allowing you to focus on treatment and recovery

We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.


Does Community-Based Fundraising Work?

Here are a few Help Hope Live success stories:


"The TRUE meaning of a loving community"

Leo Patnode experienced a brain stem stroke during a business trip. His family engaged Help Hope Live for multiple out-of-pocket medical costs, including hospital care, physical therapy, and caregiving. Leo’s campaign has surpassed $90,000 raised so far with Help Hope Live.

" It is now our time to help them get through these difficult times."

Mom of three Carmel Longoria learned that her cancer was out of remission. Out of work due to the diagnosis and experiencing ongoing chemotherapy and travel for treatment, Carmel and her family turned to Help Hope Live for trusted medical fundraising. Within seven months, they raised over $12,800.

MOST COMMON TRANSVERSE MYELITIS EXPENSES

Travel expenses
Medications
Specialized equipment
Physical therapy

RESOURCES

Ready to Get Started?

If you choose to fundraise with our nonprofit, here’s how the process will look:

1. APPLY for assistance

2. YOU’LL BE PAIRED with a Client Services Coordinator

3. YOUR COORDINATOR will provide you with one-on-one fundraising help, including personalized fundraising materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and more.


Need Other Financial Help Options?

For alternatives to fundraising, you can find information on a variety of other financial assistance options. Please view our Catastrophic Illness Resource Directory for insight into sources of direct financial aid, support groups, and other resources for transverse myelitis patients and their families.