Treatment Congenital myasthenic syndrome (CMS)

It is important to try to get as much gentle exercise as possible and to continue physiotherapy to prevent complications like joint stiffness (contractures), However, it may help to use a wheelchair for any distance, to help conserve strength.

Medication, anaesthesia and operations

Some drugs such as antibiotics, cardiovascular drugs and drugs for psychiatric conditions should be avoided by people with Congenital myasthenic syndrome (CMS) because they interfere with normal neuromuscular function and may make symptoms worse.

Always check with the doctor who treats your CMS before taking any new medication as it can be dangerous to start a new drug without consultation. It is also important to inform the anaesthetist and surgeon of your diagnosis before undertaking any surgery or treatment.

A Medic-Alert card or bracelet can be an important source of information to emergency care providers about CMS. Muscular Dystrophy UK has developed a printable, online neuromuscular care plan that you can complete with all the information health professionals will need to know specifically about your condition. Contact our care and support team and they will send you one.

In the event of serious health concerns

Your GP is your first point of contact for minor illness but for more serious concerns, you should contact your physician or paediatrician. In an emergency, dial 999 for an ambulance. It is also advisable to keep a list of useful numbers handy for family members and carers to contact in an emergency.

If your child has CMS, you should have a rapid access agreement to the paediatric service at the local hospital so you won’t have to wait to be seen if he or she is unwell.

People who have breathing difficulties and recurrent chest infections should be under the care of a specialist respiratory centre and are advised to have the annual flu and pneumococcal vaccine. Parents and carers should also be trained in cardiopulmonary resuscitation.

Where to go for more information

Apart from your doctor and hospital specialist, there are specialist nurses in many centres who will offer help, advice and support to a family. Ask your GP or hospital specialist whether such a service exists in your area. The care and support team at Muscular Dystrophy UK can help you find your nearest specialist centre.