About Transverse Myelitis

Transverse Myelitis is a rare neurological disorder that causes inflammation in the spinal cord, potentially leading to a wide range of symptoms, including pain, muscle weakness, sensory changes, and mobility challenges. Below, you’ll find detailed information about TM, its causes, symptoms, diagnosis, and treatment options.

What is Transverse Myelitis?

TM is a rare neurological disorder, one of a group of “neuroimmune” diseases of the central nervous system, which also include ADEM, NMO (Neuromyelitis Optica), NMO-SD, AFM, MOG-AD. These conditions all involve inflammatory attacks in the central nervous system (brain and spinal cord). They are differentiated primarily by the location of the attack and by the attacks being either monophasic (one off) or multiple episodes. These disorders share common mechanisms and have many common symptoms.

Causes of Transverse Myelitis

TM may occur in isolation or with another illness. When TM occurs without apparent underlying cause, it is referred to as idiopathic. Idiopathic TM is assumed to be a result of abnormal activation of the immune system against the spinal cord. TM often develops alongside viral and bacterial infections. TM can be acute or slow developing.

Approximately one third of patients with TM report a flu-like illness with fever, around the time of the onset of neurological symptoms. Vaccinations may also be linked with TM and especially ADEM, but causation cannot be proven.

What are the symptoms?

There is tremendous variability in the presentation of symptoms, depending on the vertebral level of the spinal cord affected and on the severity of the damage to the myelin and the neurons in the spinal cord.

The symptoms of TM include muscle weakness, paralysis, parasthesias or un-comfortable nerve sensations, neuropathic pain, spasticity, fatigue, depression and bladder, bowel and sexual dysfunction.

The main symptoms of transverse myelitis are muscle weakness in the legs (and, less commonly, in the arms), change in sensation (unusual feelings) in the lower half of the body, pain, and problems with the bowel and bladder. People might also experience fever, headache, tiredness, muscle spasms (spasticity), and a general feeling of being unwell.

Commonly, the very first symptoms people with transverse myelitis experience are pain in their lower back and a sudden change in sensation in the legs (unusual feelings such as burning or tingling). These unusual sensations are called paraesthesia.

The unusual feelings (paraesthesia) that people experience can include numbness, pins and needles, and a heightened sensitivity to touch and temperature. The feel of clothing on the skin might cause pain (allodynia). People might experience extreme heat or cold, or lose the ability to tell the temperature of water or objects. Sometimes, a horizontal line or band can be drawn around the torso (the trunk of the body) or around the waist where the unusual sensations begin. There is a good information about neuropathic pain on the Brain and Spine Foundation’s website.

Bowel and bladder problems might include incontinence (a loss of control over bowel movements or passing urine) or needing to go to the toilet with increased urgency. Muscle weakness in the legs can progress to a complete loss of movement (paralysis) very quickly.

Diagnosis

If you are one of those people with acute TM where the condition has come on in a matter of hours, your GP will probably have referred you or you will have taken yourself to A & E at your local hospital. It is estimated that there are only about 200 cases a year of TM in the UK. This means that your average GP will encounter a case once every 100 years, so it is likely that your GP may not be familiar with TM. Diagnosis of TM relies on patient history, physical examination, MRI, lumbar puncture and blood tests. It is however, a rare condition and many neurology departments rely on once a week visits from a Regional Neuroscience Centre specialist. For some people, the diagnosis of TM may happen years after the original attack.

Treatment & Recovery

What treatments are available?

Corticosteroid drugs are typically used as a treatment for spinal cord inflammation with TM patients. Plasma exchange or more radical immunosuppressant therapies may be used if steroids don’t work. All other treatments only address the symptoms at this time.

Rehabilitation

Rehabilitation, especially physiotherapy, is essential. Patients should expect to follow a rehabilitation regime typical for any spinal injury. Your hospital should provide with an initial programme, but you will need to be committed to doing exercises on a continuing basis.

More on physiotherapy, and finding a good neuro-physio, can be found here.

Who gets TM and what are the chances for recovery?

TM is a rare disorder with an incidence estimated at 200 new cases per year in the UK. Age at onset of this condition can be from infancy to older adult (five months to 80 years). The peak ages for a TM diagnosis appear to be 10-19 and 30-39 years. Males and females seem to be equally diagnosed.

Recovery from TM generally begins within eight weeks from onset. Recovery is often rapid during months three to six and may continue for up to two years after onset. One third of those diagnosed with TM make a good recovery, one third have only a fair recovery (ie moderate degree of permanent disability), and one third show no recovery.

TM is generally a monophasic illness (one-time occurrence). However a small percentage of patients may suffer a recurrence, especially if there is a predisposing underlying illness.

More TM Information

Other Rare Neuroimmune Disorders

The Importance of Physiotherapy

Recently Diagnosed with TM?

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Health Condition Insight Report into Transverse Myelitis

When applying for PIP, DLA, Attendance Allowance, or other benefits that require an explanation of TM, it is often helpful to include a copy of the Condition Insight Report, which was written specifically to accompany benefit applications. The report can also be printed and shared with anyone who would like to learn more about the condition.

To view and download the report, please click on the below button.