Our Service
Our specialist clinic at the National Hospital for Neurology and Neurosurgery was created to provide a central service that has experience and expertise in diagnosing and managing muscle channelopathies. It is directly funded by NHS England to promote equality in health care for rare diseases. Even if a diagnosis of a channel problem has already been made then you may still be referred to us for advice on management and treatment of your muscle symptoms.
Conditions we see:
- Hypokalaemic periodic paralysis
- Hyperkalaemic periodic paralysis
- Andersen-Tawil syndrome (ATS)
- Myotonia congenita
- Paramyotonia congenita/ Sodium channel myotonia
We also see patients with problems related to peripheral nerve hyperexcitability and brain channelopathies.
The Outpatient Clinic
We offer a specialist diagnostic and advisory service for muscle channelopathies. This includes a combination of:
- Detailed clinical assessment
- Specialist neurophysiology (including short and long exercise testing)
- Genetic testing
- MRI scanning of the muscles
The main out-patient clinic takes place on alternate Tuesdays at the National Hospital for Neurology and Neurosurgery with follow up clinics on Tuesdays and Fridays.
The first appointment is usually an all day visit, and as well as talking to the doctor in clinic and being examined, patients may undergo neurophysiology tests (electrical recordings of the nerves and muscles), blood tests and an ECG (electrical recording of the heart). This aims to reduce the number of visits a patient has to make to get a diagnosis.
Supporting clinics
Nurse-led clinics
In addition the Clinical Nurse Specialist (Natalie James) offers telephone clinics to support patients in between clinic appointments. This often includes monitoring response to medications that are started in clinic. Natalie can also provide advice to your employer or school on your condition, and to other specialists e.g. if you need an operation and anaesthetic or if you are pregnant.
Physiotherapy Clinics
Physiotherapy assessments are available with our Specialist Physiotherapist (Sarah Holmes). These usually take place at your first clinic visit and then you may be offered follow up visits with Sarah in person or via video, phone or email. Sarah can also liaise with and offer advice about the management of your condition to a neurological physiotherapist nearer to where you live. Sarah also has Pilates and group clinics available to help patients with channelopathies.
Other clinics
The service also has direct links to a specialist orthotics clinic, vocational rehabilitation (if you need advice on modifications at work) and a psychologist. We also have close links with specialist cardiologists at Bart’s Health Care and refer to them if any detailed cardiac investigation or advice is required.
Virtual and remote services
We recognise not all patients can travel to London for review and are also happy to offer video appointments.
We also offer an advisory service via letter or email to other specialists who may be looking after patients with a muscle channelopathy who would like further advice.
