Physiotherapy
The primary aim of an individual with a neuromuscular disorder is to increase or at least maintain function and mobility. Physiotherapy can assist in doing this, and it can also maintain breathing capacity, delay the onset of curvature of the spine (scoliosis), and help prevent the development of contractures. It is important that the physiotherapist involved is familiar with the treatment of people with neuromuscular disorders.
Exercise
There is debate over whether people with neuromuscular disorders should undertake strenuous physical exercise. Some say that putting additional strain on already weakened muscles will cause additional harm, whilst others believe that the exercise may increase muscle strength.
Insufficient evidence exists to support either, but it is believed that moderate non-weight bearing exercise such as swimming, walking or peddling may be the best solution. This sort of aerobic exercise helps to maintain a healthy cardiovascular system and a steady weight. It is however, important that this is discussed fully with a clinician.
Ventilation
Breathing problems are common with minicore myopathy, and thus respiratory function should be regularly monitored. A decrease in oxygen intake can lead to, among other things, headaches, breathlessness, poor appetite and disturbed sleep.
Night time ventilation involves the use of a face mask attached to a small machine, which assists in breathing. This aids the muscles which control breathing, and allows a greater intake of oxygen. Night time ventilation may be beneficial to people with minicore myopathy, but this should be discussed fully with a consultant to determine whether it is appropriate.
If there is a tendency to chest infections it is worth considering pneumovax and the flu vaccine.
Corrective surgery
Scoliosis, or curvature of the spine, is common with minicore myopathy. Spinal surgery aims to correct the posture by realigning the spinal column, and involves the insertion of rods, screws or wires.
There are benefits and risks associated with this surgery, and more information is available from the Information and Support Line. As with other treatments, it is very important that the options are discussed fully with a consultant or specialist, before a decision is made. In young children a spinal brace may be used and in children who do not walk moulded seating is used.
Feeding tube (or gastrostomy)
This is a tube that goes into the stomach through the stomach wall and enables a person to be given food and fluids by passing them directly into the stomach via the tube.
People with a myopathy may have problems with swallowing which can lead to choking and inhalation of food. This can result in chest infections. A feeding tube prevents this from happening.
There are a number of different types of feeding tube which are available, and these are fitted by a short surgical procedure. You can read our factsheet on Gastrostomy for more information.
Is there a cure?
Currently there is no cure for minicore myopathy although much research is currently being conducted into all the congenital myopathies. Although there is no effective treatment to halt the progression, there are a couple of different ways in which to manage the symptoms of minicore myopathy and these are outlined above.