What are the symptoms?
There is tremendous variability in the presentation of symptoms, which are based on the 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.
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 300 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.