Treating Transverse myelitis, a Rare Spinal Cord Disease

If you were to hear about a disease of the spinal cord that can limit a person’s ability to walk, you might think of multiple sclerosis, which affects nearly 1 million people in the United States.

But a much lesser-known condition called transverse myelitis (TM) shares many of the same symptoms, including weakness or paralysis, tingling, numbness, pain, and trouble controlling bladder and bowel function.

TM, characterized by inflammation of the spinal cord, is the reason that at least 33,000 Americans live with a disability—and that figure is probably an underestimate.

TM can lead to a spectrum of outcomes for patients: Some have a short episode and recover fully, and others live with disability.

“With proper and timely treatment, people who are paralyzed might have the chance for full or near-full recovery,” says UNC Health neurologist Irena Dujmovic Basuroski, MD.

Symptoms of Transverse Myelitis

TM causes a person’s spinal cord to become inflamed, interfering with the body’s ability to transmit signals to and from the brain.

The location and severity of the inflammation determine the kinds of symptoms a person may have. Symptoms include:

  • Limb weakness that often starts in the legs and may spread into the arms
  • Numbness, tingling, burning or itching, referred to as sensory alterations
  • Sensitivity to touch
  • Pain, including back pain at the location of the inflammation
  • Muscle spasms
  • Bladder control problems, including the need to go frequently or urgently, leakage, incomplete bladder emptying, interrupted urine stream or inability to empty the bladder (a person can have a combination of these symptoms)
  • Bowel control problems, such as diarrhea, constipation or both
  • Sexual dysfunction
  • Fatigue

Causes of Transverse Myelitis

Transverse myelitis can be caused by an infection or an abnormal immune response—that is, the body’s immune system attacks its own cells and tissues.

People living with autoimmune disorders such as lupus, rheumatoid arthritis, sarcoidosis and Sjögren’s syndrome are at higher risk for TM, as are those with immune-mediated neurological diseases such as neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disease (MOGAD), Dr. Dujmovic-Basuroski says.

“Sometimes TM-like symptoms are the first presentation in multiple sclerosis, because MS can also cause inflammation at various levels of the spinal cord,” she says.

The most common viral causes of transverse myelitis are the group of herpes viruses, HIV, West Nile virus and enteroviruses. Doctors have also been looking for connections between the virus that causes COVID-19 and cases of TM.

“We had some rare patients with post-COVID-19 TM,” Dr. Dujmovic Basuroski says. “The incidence of acute myelitis that occurs in very close association with COVID-19 infection is unknown.”

Bacterial infections that can prompt TM are Staphylococcus aureus, Mycoplasma infections, Lyme disease, syphilis, tuberculosis and other causes.

In some cases, a cause cannot be identified. These cases are referred to as idiopathic TM.

Diagnosing Transverse Myelitis

If you feel weakness in part of your body and it’s spreading quickly, go to the emergency department. If you feel a gradual onset of weakness in your legs and arms over days or weeks, it’s important to see your primary care doctor promptly. Your doctor will help identify any issues or refer you to a neurologist for evaluation. You also can ask for a referral.

It’s important to get a diagnosis on time and get treatment quickly. Delays in treatment of TM can lead to more disability.

TM is diagnosed in about 1,400 people per year in the United States, although experts think that is probably an underestimate. Women in their teens and 30s are most often diagnosed with the disease, but it can affect people of all ages, including children. There is no genetic component to TM.

Diagnosis of TM is made based on clinical symptoms, MRI findings, spinal fluid tests and some blood tests.

It’s not possible to prevent the initial episode of TM, but it is possible to prevent recurring episodes in some people.

Treatments for Transverse Myelitis

Most people are hospitalized with their initial episode of transverse myelitis.

Treatments depend on the cause of TM. If it was caused by an infection, doctors will treat the infection as they normally would, such as with antibiotics for a bacterial infection or antiviral medications for a viral infection. If TM was caused by an autoimmune response, doctors will use immunotherapy, such as high-dose steroids, plasma exchange procedures or intravenous immunoglobulins.

In more severe cases that do not respond to initial treatment, doctors sometimes turn to more potent immunosuppressive drugs, such as cyclophosphamide. Some patients with a severe attack of TM may require a ventilator and feeding tube.

With treatment, most people with TM will reach at least some degree of recovery after the initial attack, regaining neurological functions that may have been lost.

Doctors watch for signs of recovery in the first three months after onset. Significant recovery is unlikely if a patient does not show improvement during those first few months.

“It is an amazing feeling to share happiness with the TM patient who starts walking again or even recovers completely after being paralyzed and wheelchair-bound,” Dr. Dujmovic Basuroski says.

About one-third of people with TM recover with only few or minor symptoms, she says, while one-third have moderate permanent disability, and one-third have virtually no recovery and are left with significant disability.

Living with Transverse Myelitis

At this time, there is no cure for residual disability in people who do not recover completely after TM. Treatments are designed to regain the function in your body that was lost, but many people will need to adapt to living with TM. For some, that means learning to get around in a wheelchair because of paralysis. For others, it may mean managing chronic pain and the toll that takes on their mental health.

“An individual living with chronic disability and their families will need long-term support with adjusting their aspirations, lifestyle and employment,” Dr. Dujmovic Basuroski says. “Many people have long-term distress and may develop psychiatric disorders, most commonly depression or anxiety. But help is available, and it’s important to get it.”

Several organizations and support groups offer resources to help people living with TM, including the Bodford Family Transverse Myelitis Center at UNC Health, the National Multiple Sclerosis Society, the National Organization for Rare Disorders and the Siegel Rare Neuroimmune Association. The Guthy-Jackson Charitable Foundation is dedicated to supporting patient education and research in the field of neuromyelitis optica spectrum disorders, one of the frequent causes of TM.

Researchers are working on new therapies for people living with TM. If you are interested in participating in medical research, whether you have TM or another condition, register at UNC’s Research for Me website.