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How could my condition affect me?
Every person has different symptoms and will require different levels of support and advice from different therapists.
Neuropathic (nerve) pain arising directly from damaged nerves in the spine, there are no particular triggers, this pain is described as burning, sharp, electrical shock, shooting or an uncomfortable numbness. Medication suggestions are Amitriptyline, Gabapentin, Pregabalin and Carbamazepine.
Nociceptive (musculoskeletal) pain often has a more obvious cause, such as banging your knee. In NMOSD, the most common cause is pressure on joints from altered gait (the way you walk). Medication suggestions such as Paracetamol or Ibuprofen may be helpful.
Increased muscle tone and spasms arises from damaged nerves in spinal cord that affects the control of muscles, including when they contract and relax. This can present as prolonged contractions of the muscles, which are called spasms. Medication suggestions are Baclofen, Tizanidine, Gabapentin.
Tonic spasms this is a painful spasm of the muscles that lasts seconds to minutes but frequently. Often it’s controlled by Carbamazepine at low doses.
Joint stiffness is a discomfort after a period of inactivity (such as waking up in the morning or sitting for an extended period of time. Medication suggestions are Baclofen, Tizanidine, Dantrolene. Exercises and stretching are often useful.
Muscle weakness is a reduction in the strength of one or more muscles affecting mobility (legs) or activity (arms). There are no medications to improve weakness. Exercise and stretching are good.
Bladder symptoms include urgency, hesitancy, frequency and nocturia (passing urine at night) and retention (unable to pass urine) due to damage on the spinal cord. Medicines like Oxybutynin, Tolterodine may be helpful or learning self-catheterisation, (a very simple technique).
Bowel symptoms mainly constipation, urgency and sometimes faecal incontinence are also due to damage on the spinal cord and immobility. Laxatives, a high fibre diet and fluids as well as abdominal massage may be useful.
Sexual dysfunction where men may experience difficulty getting an erection, or reaching orgasm, and women may also have difficulty reaching orgasm due to a lack of sensation and numbness.
Osteoporosis (brittle bones) may be the result of long-term use of steroid medication or a lack of weight-bearing activities.
Depression – changes in lifestyle associated with the complications of NMOSD can increase the risk of developing depression.
Why do Symptoms persist after the relapse has recovered?
When a relapse occurs there is inflammation and swelling in the brain, so messages cannot get from the brain to their target, eg a relapse of the spinal cord does not allow nerve messages to pass to the area below the inflammation causing the symptoms of transverse myelitis.
Over time there is some spontaneous recovery and symptoms may improve over 2-6 months. However, if the nerves have been damaged or destroyed new pathways can not be made, resulting in permanent damage.
Some people will have very few residual symptoms from a relapse, whilst others may have more. The severity will also be different between individuals.
Symptoms such as:
Loss of vision as a result of damage to the optic nerve.
Paralysis of limbs due to damage to the spinal cord in the neck, which may affect legs and arms causing weakness and little function.
Breathing difficulties due to damage in cervical (neck) area of spine causing muscle weakness which, in extreme cases will require artificial ventilation (a machine that helps you breathe).
OR symptoms may be indirectly caused resulting from damage of the nerves.
The symptoms are treated to try and improve your daily living either with medication or therapy. The medications do NOT prevent further relapses. There is no ‘right’ drug as individuals respond differently to different treatments. The overall aim of symptom management is to control or reduce symptoms impairing functional abilities and quality of life. You may have to trial several regimes to find the most suitable drug for you.
What about managing permanent disability?
Many symptoms overlap with each other for example pain interferes with all activities such as housework, work, exercise and consequently has an impact on a person’s mood, affecting family relationships. Though problems can be tackled on their own a multi-disciplinary approach is essential to provide holistic care.
Combined efforts by doctors, nurses, occupational therapists, physiotherapists, orthoptics and social services will help the complex requirements of the individual patient. Visual aids, walking aids, motorised wheelchairs, and home adaptations can improve quality of life remarkably and many patients live an active life.
Can deficits that are present for many years be reversed?
It is rare for this to happen. Physical adaptations (modifications in house, wheelchair etc) and lifestyle modifications (change of job, moving to a single floor house) should be planned in advance and money spent wisely rather than waiting for ‘miracles to happen’ or trying out costly alternative medicines or exotic cures.