Transverse Myelitis Awareness Day 2023
As solicitors specialising in spinal injury claims, the spinal injury team at Bolt Burdon Kemp are well aware of the devastating effects that Transverse Myelitis (TM) has on the lives of those who develop it.
TM is a rare neurological disorder and as such the first time many people learn about this condition, its symptoms or its impact is when it affects them or someone they care about.
Friday 9th June 2023 was TM Awareness Day 2023 and I have written this blog to try and increase awareness of this condition and also to highlight some of the places where support can be obtained.
What is Transverse Myelitis?
It is estimated that about 300 people develop Transverse Myelitis each year in the UK. In simple terms, transverse myelitis (TM) is an inflammation of the spinal cord. As such, it can disrupt the way in which the spinal cord normally works, sending impulses from the brain to the nerves in our body, and carrying sensory information from our various body parts back to the brain. Whilst this condition is more frequently reported in younger people (ages 10-19 and 30-39), it can happen to anyone regardless of their age, gender or race. TM is not thought to be a hereditary disease.
Like with other serious conditions such as stroke or heart attack, it is important to know the early signs and symptoms of this condition and that you should seek urgent medical help if you have any one of them.
I have included below the list of common symptoms but they may vary and can come on suddenly (within a few hours) or gradually (over a period of days or even weeks).
- Pain – This is often one of the early signs and it may be a shooting type pain radiating from the back to your arms and/or legs
- Problems with sensation – You may experience numbness, a burning sensation, feeling of pins and needles in your legs, your bottom or your genitals. Problems with sensation may also affect your torso especially if the inflammation affects the higher parts of your spinal cord (from the chest up).
- Weakness in your legs and possibly arms – It is important not to ignore this worrying sign and seek urgent help as soon as it is experienced. It can quickly progress to partial or complete inability to move your legs and/or arms.
- Problems with bladder and bowel function – There are many variations of this symptom including increased frequency, feeling that you do not empty your bladder fully or difficulty emptying the bladder, urinary and/or faecal incontinence as well as constipation
What causes Transverse Myelitis?
There are many potential causes of TM and it will be important for your treating doctor to identify the likely cause in your case as soon as possible so that you can receive the correct treatment. This approach will give you the best chance of recovery.
I have listed the most common causes below:
Infections can be bacterial or viral. There are other types of infections that can cause TM. TM can also be caused as a result of the body’s immune response to an infection.
- Inflammatory conditions
There are various inflammatory conditions that may cause TM including multiple sclerosis, neuromyelitis optica and several autoimmune disorders.
- Some vascular disorders may also cause TM
How can TM be diagnosed?
In order to diagnose the condition, it is important that the treating doctor takes a detailed history including all the symptoms and your previous illnesses and performs a thorough examination including checking your back for tenderness and pain, assessing power in your legs and arms (as appropriate), checking for other neurological problems and issues with sensation. The examination should involve assessing sensation in the genital area (doing the so called pin prick test and also rectal check). If there are any bladder issues, your doctor should arrange for a bladder scan to be undertaken to check if you are fully emptying the bladder.
The most common diagnostic investigations that are performed to diagnose TM are:
- MRI scan of the whole spine and the brain
If there is inflammation in the spinal cord this would normally be demonstrated on an MRI scan of the spine. The MRI scan of the brain may help to find the underlying cause of the TM, for example multiple sclerosis.
- CT scan
Sometimes, a CT scan may be used to detect inflammation
- Blood tests
These are undertaken to check for the presence of autoantibodies which can indicate presence of an autoimmune disorder which may be the underlying cause of TM
- Lumbar puncture
This investigation involves taking a sample of cerebrospinal fluid (CSF) by inserting a thin needle inside your back. The sample is analysed to check for presence of infection and/or inflammation and this way may help identify the exact cause of TM.
Treatment and recovery
As mentioned earlier, treatment for TM will depend on the underlying cause. Whilst there is no cure for transverse myelitis as such, treatment is aimed at preventing or reducing the neurological damage to the spinal cord. Treatment options include intravenous (through the vein) administration of steroids, plasma exchange therapy, immunosuppressing medication or antiviral medication.
The extent to which one can expect good recovery will, at least to some extent, depend on how quickly the condition is diagnosed and correct treatment administered. The quicker the treatment, the better the likely outcome. This is why it is so important to seek medical help as soon as the first signs are experienced.
It is important that people who develop TM receive the necessary rehabilitation to improve their functional independence including specialist physiotherapy, occupational therapy (to help with everyday tasks including wheelchair use, transfers, dressing etc), bladder and bowel management training and psychological input to help them adjust to the effects of their condition on their life. The extent of rehabilitation needed in each case will depend on the degree of neurological damage caused by TM.
Although some people may fully recover from transverse myelitis, the healing process may take considerable time (several months or even years). Most people with transverse myelitis will have at least partial recovery. Unfortunately, some people may suffer permanent neurological damage and difficulties that affect their daily life. This usually happens where there was some degree of delay in diagnosis and correct treatment being put in place.
Help and support
The effects of TM can be life changing; it is important therefore that anyone with this condition has as much support as possible. Whilst it’s a rare condition, you are not alone. The Transverse Myelitis Society has a lot of information on its website. Neurological conditions can be extremely isolating and groups like the TM Society are there to help and to offer a listening ear. Additionally, TM is a spinal cord injury and therefore sufferers will find support through the Spinal Injuries Association. The SIA have regional Support Network Officers who can provide a lot of information not to mention peer support. I would also recommend reading Support Network Manager Carol Barraclough’s fantastic blog detailing her journey with TM.