Have you heard of Transverse Myelitis?
9th June 2019
Today is Transverse Myelitis Awareness day!
…Transverse- what, sorry?
Transverse Myelitis (TM) is a rare neurological condition, so you will be forgiven for not having heard of it before. The average GP sees a case of TM once every 100 years.
TM is thought to be the result of the immune system mistakenly attacking the spinal cord, causing inflammation. This damages or completely destroys myelin (the fatty protection of our nerves) and then goes on to interrupt the communication between the nerves in the spinal cord and the rest of the body.
‘Within hours I had lost all ability to move my legs. I had little to no feeling or sensation below my belly button…. Unfortunately, they were unable to diagnose me for another three weeks. I was one of those rare cases and the doctors had to do some research.’ (1)
It isn’t always possible to work out why this happens. It has been noticed that TM tends to develop at the same time or soon after someone has had a viral or bacterial infection, and – very rarely – after vaccinations.
Facts about TM:
- TM usually occurs as a single episode. TM only occurs as a single episode (it can occur more than once for some people, but this is very unlikely). It is the long-term effects, however, that can be on-going for a third of those who experience TM. These can include pain, spasticity, immobility/paralysis and bowel and bladder complications. Approximately one third of make a fair recovery with minor long term affects, and another third do make a good or full recovery.
- TM is not hereditary. You cannot pass an increased risk of TM to your family.
- Anyone can have TM . TM can affect anyone, of any age, at any time. Men are just as likely to be diagnosed as women.
- TM onset is often very sudden. What starts as lower back pain, muscle weakness, or an unusual sensation in the toes and feet can quickly progress into more severe symptoms such as developing paraparesis (partial paralysis of the legs) that might even progress to paraplegia (complete paralysis of the legs). This loss of spinal cord function can last over several hours to several weeks.
- There is no cure for TM at the moment. As with many spinal cord disorders, there is no definitive cure that currently exists. However, there are many ways to manage symptoms such as steroids, plasma exchange therapy and physical therapy to help strengthen muscles.
Experiencing TM can be incredibly overwhelming and scary. One day you are feeling fine, and the next you suddenly cannot move. The rarity of the condition means that the person probably didn’t know of it beforehand, or know of anyone else who has had TM. Psychological support is therefore vital in managing the sudden shock of the symptoms experienced, the diagnosis of TM itself and also the adjustment to any long-term effects throughout life.
Sharing this information, even if it reaches a few people, will help spread awareness of this rare neurological condition and get the word out there!
Read more about Stacy’s story she shared on the Transverse Myelitis Association website: https://yoocanfind.com/Story/986/my-transverse-myelitis-story