Living with LEMS

Lambert-Eaton myasthenic syndrome (LEMS) is a rare autoimmune disorder that affects the nerve cells controlling muscle movement. Immune cells target calcium channels in nerve cell endings, and interfere with the release of the neurotransmitter acetylcholine (a chemical messenger that transmits signals from nerve cells to muscles to initiate muscle contraction).

LEMS is characterized by muscle weakness, mainly in the lower limbs. Patients also experience fatigue, muscle stiffness, pain, facial weakness, drooping eyelids, and problems with swallowing.

Challenging diagnosis

Because the clinical signs and symptoms of LEMS are not specific, diagnosis is challenging and can take a long time. In some instances, patients are referred from one specialist to another over several years to find the cause of their symptoms.

One of the two types of LEMS is associated with small-cell lung cancer. In these patients, LEMS symptoms present an additional burden to the symptoms of cancer and its treatment-associated side effects. However, with cancer treatment, LEMS symptoms usually improve. The cause of the other form of LEMS is not well understood.

Dealing with symptoms

With no cure for LEMS, patients can access treatments to help relieve their symptoms and improve their quality of life.

As in other autoimmune diseases, patients with LEMS may experience flares or periods of intense symptoms. Between flares, symptoms can be nearly absent in some patients.

Getting support

Patients sometimes experience a lack of understanding from their family and friends or a lack of support from their neurologist. Online communities and support meetings can offer LEMS patients the opportunity to exchange experiences with others who face similar struggles.


Last updated: July 26, 2019


Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.