Myasthenia gravis

Please contact the team here uclh.referrals.myasthenia@nhs.net for further details. 

Click here to view current clinical trials in the Department of Neuromuscular Diseases.

Diseases covered

Our service specialises in myasthenia gravis and related disorders. This includes:

• Specialist clinical assessment
• Neurophysiology testing (repetitive nerve stimulation and single fibre EMG)

• Neuroimmunology (looking for antibodies) and radiological investigations (thymus gland scan)

  Diagnosis and treatment

• Treatment

• The following treatment is available:
   
• Pyridostigmine and immunosuppressant drugs
• Intravenous immunoglobulin and plasma exchange therapy (severe or rapidly worsening Myasthenia)
• Thymectomy (offered at another hospital)
• Our treatment choices are informed by clinical trial evidence (not available for thymectomy).
   

• Other conditions

• For patients with LEMS and congenital myasthenic syndromes, we may use 3,4 diaminopyridine and other agents that act on the neuromuscular junction.

• Breathing

• Some patients with myasthenic syndromes can develop diaphragmatic weakness (the diaphragm is the main muscle to help breathing). This can lead to breathing difficulties and particularly affects patients during sleep.
   
• We have a specialist service run by one of our neuroanaesthetists and a clinical nurse specialist (Helen Eddleston).
• They provide a home sleep study diagnostic service and can provide treatment in the form of non-invasive ventilation.
   

• Patient advice

• Our clinical nurse specialist provides advice via telephone and email as well as an immunosuppression monitoring service.
• The service works closely with the sleep service (non-invasive ventilation), Dr. Gordon Plant (neuro-ophthalmology) and therapy services (Speech and Language, Physiotherapy).
• We provide a service for patients throughout Greater London and the surrounding areas. We also see patients both nationally and internationally.

How to refer

Please write to:
Prof. Robin Howard
MRC Centre for Neuromuscular Diseases
Box 102
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG

Further information and support

The organisations below provide information and support for patients, relatives and carers as well as information for professionals who may care for patients with myasthenia or related conditions:

Myaware

www.myaware.org
Myaware (Myasthenia Gravis Association), The College Business Centre, Uttoxeter New Road, Derby DE22 3WZ
Tel: 01332 290219
Email: info@myaware.org

Muscular Dystrophy UK 

www.musculardystrophyuk.org
Muscular Dystrophy UK
61A Great Suffolk Street
London
SE1 0BU
Tel: 020 7803 4800 or helpline: 0800 652 6352
Email: info@musculardystrophyuk.org

Both organisations have social media links for support and contact with other people with myasthenia and related conditions.
 

Papers

Jennifer Spillane, David J Beeson, Dimitri M Kullmann. Myasthenia and related disorders of the neuromuscular junction. J Neurol Neurosurg Psychiatry 2010;81:850-857. PMID: 20547629

Meet the team

Our team includes:

Clinics

There are two specialist clinics which provide full diagnostic and therapeutic services:

• Thursday afternoon (three times per month - RSH02)
• Monday morning (twice per month - DMK03)

We also provide in-patient and day case admissions for patients who require intravenous treatments or assessment during a relapse.

Thymectomy

A dedicated cardiothoracic surgeon from The Heart Hospital performs thymectomy operations for MG patients at the NHNN.
Research projects and trials