Transverse Myelitis (TM)

What is transverse myelitis (TM)?

Transverse myelitis (TM) is a rare neurological condition caused by inflammation of your spinal cord.

Your spinal cord is a cylindrical structure that runs through the center of your spine, from your brainstem to your low back. It’s a delicate structure that contains nerve bundles and cells that carry messages from your brain to the rest of your body.

Due to inflammation, the covering (myelin sheath) around the nerve cells in your spinal cord is damaged. This interrupts the signals between spinal nerves and the rest of your body, causing issues such as loss of sensation, movement and bladder control.

TM can happen around your spinal cord in any region along your spine.

The term “myelitis” means inflammation of the spinal cord. “Transverse” refers to the pattern of changes in sensation and function — there’s often a band-like sensation across the trunk of your body in TM, with sensory changes below that band.

In most cases, TM is a one-time condition with a sudden onset followed by improvement or stabilization.

Who does transverse myelitis affect?

Transverse myelitis (TM) can occur in any person at any age. But it seems to affect people between the ages of 10 to 19 years, and 30 to 39 years more. Approximately 25% of cases affect children. TM doesn’t appear to be genetic or run in families.

How common is transverse myelitis (TM)?

Transverse myelitis is rare. There are approximately 1 to 8 new U.S. cases per 1 million people a year, or approximately 1,400 new cases each year.

What are the symptoms of transverse myelitis (TM)?

Symptoms of transverse myelitis may develop within a few hours or days (have sudden onset), or they may develop over one to four weeks. Symptoms of TM can quickly become severe.

Symptoms of TM tend to happen at or below the damaged area of your spinal cord. For example, if the damaged area of your spinal cord is in your middle back below your arms, then your legs and bladder/bowel control will likely be affected, but your arms won’t.

TM often affects both sides of your body, but it sometimes only affects one side (this is more common in people with multiple sclerosis).

At its worst point, 50% of people with TM have lost all movements of their legs, 80% to 94% of people experience numbness or abnormal sensation (tingling or pricking), and almost all people have some degree of bladder dysfunction.

For some people, these symptoms improve or go away completely with treatment, whereas others experience permanent complications.

There are several different groups of symptoms for TM, including:

• Abnormal sensations.
• Pain.
• Bowel and bladder issues.
• Muscle and movement issues.
• Sexual dysfunction.
• Other symptoms.

Abnormal sensations caused by transverse myelitis

TM may cause the following abnormal sensations (paresthesia) in certain areas of your body, depending on where the damage is on your spine:

• Numbness.
• Pricking.
• Burning.
• Sensitivity to touch or temperature.
• Diminished temperature sensitivity.

Pain caused by transverse myelitis

TM may cause pain in certain areas of your body. The pain may feel sharp or blunt. It may shoot (radiate) down your arms and/or legs or wrap around your chest and abdomen.

Bowel and bladder symptoms caused by transverse myelitis

TM can cause the following bladder and bowel symptoms:

• Constipation.
• Urinary retention (not fully emptying your bladder when you pee).
• Bladder control issues, such as a frequent urge to pee (urge incontinence).
• Urinary incontinence (urine leakage).

Muscle and movement issues caused by transverse myelitis

People with TM may have weakness in their legs that progresses rapidly. If the inflammation affects your upper spinal cord, it affects your arms as well.

Signs of muscle and movement issues include:

• Loss of balance.
• Difficulty walking (stumbling or dragging your feet).
• Muscle spasms.
• Partial loss of muscle function, which may develop into paralysis.

Sexual dysfunction caused by transverse myelitis

People with TM may experience difficulty having an orgasm, and people with a penis may experience erectile dysfunction.

Other symptoms of transverse myelitis

TM can also have the following symptoms:

• Loss of appetite.
• Headache.
• Fever.
• Respiratory (breathing) problems.

What causes transverse myelitis (TM)?

In general, transverse myelitis (TM) is caused by inflammation of your spinal cord.

When your body encounters an offending agent (like viruses, bacteria or toxic chemicals) or suffers an injury, it activates your immune system.

Your immune system sends out its first responders: inflammatory cells and cytokines (substances that stimulate more inflammatory cells).

These cells begin an inflammatory response to trap bacteria and other offending agents or start healing injured tissue. While this inflammatory response is necessary in a lot of cases, sometimes, your immune system can send out its first responders for no known reason and attack healthy tissue. Or the inflammatory response to an offending agent can be excessive and damage tissues in your body in the process.

In the case of TM, the covering around the nerve cells in your spinal cord is damaged due to inflammation.

There are several possible causes of inflammation that lead to transverse myelitis (TM). The causes can be grouped into the following categories:

• Idiopathic (no known cause).
• Inflammation from an infection.
• Systemic inflammatory autoimmune diseases.
• Central nervous system diseases.

Idiopathic transverse myelitis

Idiopathic TM means there’s no known cause of the condition. This represents the majority of TM cases.

Scientists think idiopathic TM results from an abnormal and excessive immune response against your spinal cord that results in inflammation and tissue damage. But they can’t figure out the exact cause or trigger.

Infections that can cause transverse myelitis

Bacterial, viral, parasitic and fungal infections that can cause TM include, but aren’t limited to:

• Enteroviruses (a very common type of virus, most of which cause only mild illness).
• West Nile virus.
• Herpes viruses, such as genital herpes.
• HIV.
• Varicella-zoster (the virus that causes chickenpox and shingles).
• Human T-cell leukemia virus type 1 (HTLV-1).
• Zika virus.
• Neuroborreliosis (Lyme disease).
• Syphilis.
• Tuberculosis.
• Bacterial skin infections.
• Mycoplasma bacterial pneumonia.

It’s often difficult for healthcare providers to determine whether direct viral infection or a post-infectious response from your immune system causes TM.

Systemic inflammatory autoimmune conditions that can cause transverse myelitis

Systemic inflammatory autoimmune conditions that have an association with TM include:

• Ankylosing spondylitis.
• Antiphospholipid syndrome.
• Behçet’s disease.
• Mixed connective tissue disease.
• Rheumatoid arthritis.
• Sarcoidosis.
• Scleroderma.
• Sjogren’s syndrome.
• Systemic lupus erythematosus (SLE).

Central nervous system diseases that can cause transverse myelitis

Central nervous system autoimmune conditions that can cause TM include:

• Multiple sclerosis (MS).
• Neuromyelitis optica spectrum disorder (NMOSD) — also called Devic’s disease.
• Myelin oligodendrocyte glycoprotein antibody disorders (MOGAD).
• Acute disseminated encephalomyelitis.

In some people, transverse myelitis represents the first symptom of a central nervous system autoimmune or immune-mediated condition, such as multiple sclerosis (MS) or neuromyelitis optica spectrum disorder (NMOSD).

“Partial” myelitis, which means only one side of your body is affected, is more common in MS.

NMSOD is much more likely as an underlying condition when the myelitis is “complete,” meaning it causes severe paralysis and numbness on both sides of your body. Myelitis attacks that happen to people with NMOSD tend to be more severe and are associated with less recovery than attacks in people with MS.

Can the COVID-19 vaccine cause transverse myelitis (TM)?

Post-vaccination transverse myelitis cases have been reported from two days to three months after vaccination against hepatitis B virus, measles–mumps–rubella, diphtheria–tetanus–pertussis and others. Recently, some cases of TM from one to 14 days after COVID-19 vaccination have also been reported.

Although scientists haven’t found the exact cause of this reaction, one theory suggests that the vaccination may have excited an autoimmune process. It’s very important to know that extensive research has proven that vaccinations are safe, and the potential link to TM may only be coincidental or, at worst, a very rare complication.

How is transverse myelitis diagnosed?

If you’re experiencing symptoms of transverse myelitis (TM), your healthcare provider will review your medical history and perform a physical examination.

If this review suggests a problem with your spinal cord, they’ll order further tests to:

• Eliminate the possibility that something other than inflammation is affecting your spinal cord, such as a spinal tumor, herniated disc or compression caused by an abscess.
• Confirm the presence of abnormal inflammation within your spinal cord.
• Identify the cause of the abnormal inflammation, if possible.

Healthcare providers diagnose TM if you develop spinal cord symptoms over a few days and magnetic resonance imaging (MRI) or other imaging doesn’t show another cause for the spinal cord issues.

What tests will be done to diagnose transverse myelitis?

Your healthcare provider may order the following tests to diagnose transverse myelitis and its cause:

• MRI (magnetic resonance imaging) of your entire spine: MRI is a painless test that produces very clear images of the organs and structures within your body using a large magnet, radio waves and a computer to produce detailed images. You may need two spine MRIs — one with and one without gadolinium contrast so your healthcare provider can differentiate between compressive and noncompressive lesions.
• Brain MRI: Your healthcare provider may order a brain MRI with and without gadolinium contrast to evaluate for evidence of brain lesions. A brain MRI may provide clues to other underlying causes, especially multiple sclerosis.
• Spinal tap (lumbar puncture): To perform a spinal tap, your healthcare provider inserts a needle into your lower back to get a sample of cerebrospinal fluid (CSF). Cerebrospinal fluid is the clear liquid that surrounds your spine and brain. A laboratory then analyzes the CSF sample for elevated white blood cells or IgG index or the presence of oligoclonal IgG bands unique to the CSF. These inflammatory markers are common in TM.
• Blood tests: Your healthcare provider will likely order several blood tests to check for infection-related and immune system-related causes of TM.

You may need additional tests depending on the possible cause of TM. If none of these tests suggests a specific cause, you’re presumed to have idiopathic transverse myelitis.

How is transverse myelitis (TM) treated?

The goals of treatment for transverse myelitis (TM) include:

• Treating the cause of TM, such as an infection, if possible.
• Reducing inflammation of your spinal cord.
• Relieving or reducing symptoms, such as pain.
• Managing long-term complications.

Treatment for TM involves acute (short-term) treatment of the inflammation and its cause and long-term management of the complications TM may have caused.

Short-term treatment of transverse myelitis

The first-line treatment for transverse myelitis is IV (intravenous) glucocorticoids. If your healthcare provider suspects TM, they’ll start high-dose IV glucocorticoids as soon as possible.

Glucocorticoids are a class of corticosteroids, which are a class of steroid hormones. Glucocorticoids are powerful medicines that fight inflammation and work with your immune system. In the case of transverse myelitis, glucocorticoids help reduce the inflammation of your spinal cord.

You’ll likely be on these medications for at least three to five days, but you may need the medication for longer.

Additional treatments for TM may include:

• Plasma exchange therapy (plasmapheresis): This therapy is a way to “clean” your blood. During the treatment, your healthcare provider replaces your plasma (the liquid part of your blood) with healthy plasma from a donor or with a plasma substitute. This removes the antibodies and other proteins thought to be causing the inflammatory reaction. This treatment may help people who have TM due to acute central nervous system demyelinating disease, which fails to respond to glucocorticoid therapy.
• Intravenous immune globulin (IVIG): This therapy is made up of antibodies that can be delivered through a vein (intravenously). This treatment can be used in TM to help reduce the inflammatory reaction in your spinal cord by binding to the antibodies that may be causing the TM.
• Medicines to suppress your immune system: Healthcare providers use medications such as rituximab and cyclophosphamide for people with TM who haven’t responded well to glucocorticoids, plasma exchange or IVIG therapy. These medications are known to have immunosuppressive properties.
• Medicines to manage other symptoms: Your healthcare provider may prescribe certain medications to manage your symptoms, such as pain, muscle spasms, urinary problems or depression.

Long-term management of transverse myelitis

After you’ve received treatment for the acute phase of transverse myelitis (TM), you’ll likely need rehabilitative care to improve functional skills and prevent secondary complications of TM.

Although rehabilitation can’t reverse the physical damage resulting from TM, it can help people, even those with severe paralysis, become as functionally independent as possible and have the best possible quality of life.

Long-term management of transverse myelitis may include:

• Management of urinary function: Urinary dysfunction is common in people with TM. Treatment options include timed voiding (peeing), medicines, condom catheters, clean intermittent catheterization and padded underwear.
• Management of bowel function: Constipation is a common issue for people with TM. Management of this may include special diets, strategic use of stool softeners and dietary fiber, and rectal stimulation.
• Sexual dysfunction treatments: The most commonly prescribed erectile dysfunction drugs are sildenafil (Viagra®), vardenafil (Levitra®) and tadalafil(Cialis®). Although they’re less effective in people assigned female at birth (AFAB), these same types of medications have been shown capable of enhancing a person AFAB’s sexual functioning.
• Preventing skin breakdown and pressure injuries (bedsores): Skin breakdown happens if your skin is exposed to pressure for a significant amount of time. To prevent this, you may need to change your sitting position every 15 minutes. Wheelchairs with either power mechanisms of recline or tilt-in-space to redistribute weight bearing can also be helpful. A variety of wheelchair cushions is available to minimize sitting pressure.
• Managing muscle tightness (spasticity): Stretching practices and the use of braces and splints can help manage or prevent muscle tightness. Strength exercises and muscle relaxant drugs can help as well.
• Mobility management: Physical therapists can provide exercises to improve mobility. Mobility aids, such as canes, walkers, braces and wheelchairs, can also help you be more independent.
• Managing everyday tasks: People with TM may find everyday tasks such as dressing, bathing, grooming and eating very difficult. Adaptive equipment and consultations with occupational therapists can help you find easier and more effective ways to complete these tasks.
• Pain management: Pain is common following TM. Muscle pain may be treated with drugs, such as acetaminophen (Tylenol®), nonsteroidal anti-inflammatory drugs (NSAIDs) such as naproxen or ibuprofen (Naprosyn®, Alleve® or Motrin®) or heating and cooling therapy. Nerve pain can be more challenging to treat. Certain antidepressants or anticonvulsants may be helpful.
• Psychological management: Depression is common in people with TM. It’s important to see a therapist or psychologist if you’re experiencing signs of depression or other mental health conditions. Medication can also help treat depression.

Can you recover from transverse myelitis?

Yes, you can recover from transverse myelitis (TM), but recovery looks different for different people.

Recovery from TM may be absent, partial or complete and generally begins within one to three months after initial treatment. Most people recover from transverse myelitis (TM) within three months after the condition happens. For some, healing may take months to years.

While some people recover from the inflammation with little or no lasting complications, others recover with moderate or severe disabilities.

Those who may have a poor chance of recovery include:

• People who have rapid onset (start) of symptoms.
• People whose symptoms don’t improve within the first three to six months of treatment and recovery.fiber

Can transverse myelitis be prevented?

Unfortunately, transverse myelitis can’t be prevented.

What is the prognosis (outlook) of transverse myelitis (TM)?

The outlook (prognosis) for people with transverse myelitis varies:

• Approximately 33% of people recover with little or no lasting complications.
• Approximately 33% of people recover with moderate disabilities, such as bowel issues and trouble walking.
• Approximately 33% of people recover with permanent disabilities, such as paralysis.

Transverse myelitis usually only happens once in most people. It may recur (happen again) in some people with an underlying cause, such as multiple sclerosis (MS). If only one side of your body was affected by TM, you may be more likely to develop MS in the future.

How do I take care of myself or someone else with transverse myelitis (TM)?

If you have transverse myelitis, it’s essential to ensure you’re getting quality medical care to prevent or treat complications of TM, such as bowel and bladder dysfunction and muscle tightness. You may also want to consider joining a support group to meet others who can relate to your experiences. It’s also important to seek help from a therapist or psychologist if you’re experiencing depression or anxiety related to TM.

If you’re taking care of someone with TM, it’s important to advocate for them to ensure they get the best medical care and access to mobility devices and therapy that can help them be more independent.

It can be difficult for you and your family to cope with the psychological and physical effects of TM. During the early recovery period, family education is essential to develop a plan for dealing with the challenges to independence.

When should I see my healthcare provider for transverse myelitis (TM)?

If you’re experiencing symptoms of transverse myelitis, such as sudden and worsening muscle weakness and pain, get to the nearest hospital as soon as possible.

If you’ve been diagnosed with TM, you’ll need to see your team of healthcare providers regularly to receive therapy and monitor possible complications.

A note from Cleveland Clinic

Understanding your or your loved one’s transverse myelitis (TM) diagnosis can be overwhelming. But your healthcare team will offer a robust treatment and rehab plan that’s unique to you or your loved one’s symptoms. It’s important to make sure you’re getting the love and support you need throughout your recovery and stay attentive to your health to address any new symptoms that arise.