Literally translated Transverse Myelitis (TM) means ‘situated or extending across’ and ‘inflammation of the spinal cord’.
Transverse Myelitis is an inflammation of the spinal cord, where the immune system targets the myelin sheath (nerve insulation) causing spinal cord damage. The inflammation disrupts communication along the spinal cord, potentially causing paralysis, along with motor and sensory issues. TM is considered an autoimmune condition, where the body mistakenly attacks the spinal cord.
The medical profession don’t know what causes TM but the inflammation is sometimes preceded by viral or bacterial infections. Patients have also reported attacks following a vaccination, which causes an immune response. Other cases appear to be idiopathic, which means the cause has not been identified. TM is normally monophasic i.e. once only occurrence; a small percentage of patients have recurrent TM.
Symptoms can appear suddenly, within hours or slowly over several weeks. Symptoms can be severe and include paraesthesia (strange sensations like burning, tingling and numbness), and paraparesis (partial paralysis of the legs). Dependent on the segment of the spinal cord affected, respiratory issues can also be experienced. TM can affect the autonomic nervous system, which controls involuntary body functions such as heart rate, digestion, urination and respiration. This may result in underlying health problems.
The location of the damage in the spinal cord determines which parts of the body are affected. Please refer to the diagram below.
In some people, TM may be the first presentation of other neurological conditions, including Multiple Sclerosis (MS), Acute Disseminated Encephalomyelitis (ADEM) or Neuromyelitis Optica (NMO). MS is normally characterised by short, partial lesions, whereas NMO is characterised by long lesions over a number of segments of the spinal cord – Longitudinally Extensive Transverse Myelitis (LETM).
TM is a very rare condition, (approx. 300 cases a year in the UK) and many practising physicians have neither heard nor seen a case of TM. When a patient presents at the hospital, normally through A&E, the condition is rarely recognised.
Doctors need to take a detailed medical history, perform blood tests and rule out other causes. Many patients are misdiagnosed initially. An MRI greatly assists in the diagnosis of TM, where lesions can normally be observed on the images. Unfortunately, there is no ‘cure’ for TM but fast treatment is essential for patients who are significantly affected by the condition. First line treatment normally consists of high doses of anti-inflammatory corticosteroids, either intravenously or by mouth. The steroids reduce the inflammation thus reducing any further damage. Plasma exchange or other immunosuppressant treatment may be prescribed where steroid treatment doesn’t work.
Recovery usually starts within weeks of diagnosis. After the initial treatment, rehabilitation is essential to get the affected limbs mobilised. Improvements often happen quickly within the first six months and up to two years or more. A neuro-physiotherapist will understand the condition better than a standard physiotherapist. The TMS offers bursaries for members to receive two free sessions with a neurophysiotherapist. One third diagnosed with TM report a good recovery, one third have only a fair recovery (moderate degree of permanent disability), and one third have a poor recovery. Building core strength supports recovery. Many members have found Pilates, Yoga, Tai Chi, riding and swimming beneficial.
One of the biggest residual problems people encounter is pain so a careful pain management plan is essential. Some people manage pain through alternative therapies but others will need medication to cope with the pain. Fatigue is another challenge people face daily so managing the day’s activities is important. The ‘Spoon Theory’ can help with managing fatigue by saving enough energy for the day.
Educating family members is important as many of us look ‘normal’ on the outside. Our suffering is not visible. If family members and friends have a good understanding of the condition, their support can help us enormously.
