I’ve Been Diagnosed with LEMS – What’s Next?

Finding out that you have a rare disease can be frightening and confusing. Here are four tips to help you through a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS).

Don’t panic

Make sure that you understand your diagnosis and, if necessary, get a second opinion to confirm it.

Cancer screening

LEMS can be caused by the immune system mistakenly attacking the nerves. In some cases, this can be triggered by some types of cancer. Patients diagnosed with LEMS must be screened for cancer, because early diagnosis is key for effective treatment.

Develop a treatment plan

Work with your physician to develop a treatment plan — a detailed description of the disease and its symptoms, with treatment options, side effects, goals, and plan for moving forward. Go over your plan during every doctor’s visit, and update it after every appointment.

Connect with others

Connecting with other rare disease patients can be difficult, but this website is one of the places to meet other patients, and find out about research and treatment options. You can also read the “LEMme Tell Ya” column by Dawn DeBois.

The following organizations also offer information about treatments and ongoing research in LEMS:

• The Myasthenia Gravis Foundation of America.
• The American Autoimmune & Related Diseases Association.
• The Muscular Dystrophy Association.

Last updated: August 5, 2019

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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.