Transverse myelitis: symptoms, causes, treatment and recovery

NHS inform lists the symptoms below. The MS Trust says the location of the inflammation in the spine determines where in the body symptoms are felt, and that bladder, bowel and sexual problems are common because nerve messages have furthest to travel to reach those areas. At its most severe it can cause paralysis.

Great Ormond Street Hospital (GOSH) explains that if the swelling is in the lower back, symptoms can include back pain, weakness of both legs and bowel and bladder problems. If it is higher, such as around the neck, both arm and leg weakness can occur and in severe cases breathing can be affected.

• Muscle weakness in the legs, and sometimes the arms.

• Mobility problems.

• Unusual sensations and numbness.

• Bladder problems and bowel problems.

• Sexual problems.

• Pain, including back pain.

Sudden weakness or numbness in the legs or arms, new difficulty passing urine or controlling your bowels, or severe back pain with these symptoms need urgent assessment. Call 999 or go to A&E, or call NHS 111 if you are unsure. NHS inform says to speak to your GP practice if you have symptoms, and that your GP will refer you to a neurologist if they think you have transverse myelitis. Breathing difficulty needs 999.

NHS inform says the swelling damages the nerves and can leave permanent scars or lesions that interrupt communication between the nerves in the spinal cord and the rest of the body. Transverse refers to the swelling being across the width of the spinal cord, and myelitis means spinal cord inflammation (MS Trust).

The MS Trust says it affects men and women equally. NHS inform says in most cases there may only be one episode, but sometimes it can happen repeatedly, and it can be the first sign of multiple sclerosis (MS) or another condition.

NHS inform says sometimes transverse myelitis requires no treatment as it will improve on its own, and sometimes treatment is needed for the symptoms, the swelling or the underlying cause.

GOSH says steroid treatment can reduce some symptoms and stop new symptoms developing, given into a vein once a day for three to five days once the diagnosis is made. If there is no improvement within a few days, intravenous immunoglobulin or plasma exchange may be considered. It adds that at present we do not know the best way to treat it.

NHS inform says there are several different causes, and sometimes a cause cannot be found, which is called idiopathic transverse myelitis. GOSH says it is caused by the immune system becoming mis-programmed and attacking the healthy myelin covering the nerves in the spine; sometimes it follows a viral infection, and sometimes it occurs with no warning.

• Autoimmune disease, including MS-like swelling, neuromyelitis optica (NMO), MOG antibody-associated myelitis, sarcoidosis, Sjogren's disease and lupus.

• Viral infection, such as echovirus, enterovirus, Epstein-Barr virus, hepatitis A, herpes simplex, HIV, rubella, influenza or varicella zoster.

• Bacterial infection, such as syphilis.

• Some cancers that trigger an unusual immune response.

NHS inform says your GP will refer you to a neurologist, who can arrange tests including a neurological examination, an MRI scan, a lumbar puncture and blood tests, and sometimes CT scans to look for conditions that cause transverse myelitis.

The MS Trust adds that you may be asked to have tests to look for antibodies in the spinal fluid, which can indicate you are likely to have further episodes and that MS or another condition might be more suitable as a diagnosis. GOSH says children have blood tests, an MRI brain scan and possibly an eye test.

GOSH says the long-term prognosis for children varies and some make a very good recovery, while a number are left with some motor weakness and residual bowel and bladder problems. It says it usually occurs only once, and rarely an underlying cause increases the chance of further attacks.

The MS Trust says between 13% and 63% of people with transverse myelitis ultimately receive an MS diagnosis, and these tend to be those who first noticed symptoms at a younger age. Rehabilitation, physiotherapy and occupational therapy are key, and the MS Trust points to support from the Transverse Myelitis Society and the Brain and Spine Foundation.

These conditions overlap, which is why specialist tests matter. The MS Trust and NHS inform describe the differences in general terms.

On the NHS, suspected transverse myelitis is assessed urgently, often in hospital, by neurology with MRI and spinal fluid tests, then followed by rehabilitation and continence or spasticity services. Private neurology review can provide a second opinion or faster MRI, but inpatient treatments such as intravenous steroids or immunoglobulin are generally delivered through NHS services.