Living with LEMS

June 8, 2017

By Dr. Anne Murray

I was diagnosed with LEMS or Lambert Eaton Myasthenic Syndrome in May 2011. I started to have symptoms after I developed breast cancer in 2010. I had cancer surgery (lumpectomy) and radiation treatments toward the end of 2010. My neurologist at Emory in Atlanta was treating me for another condition (Cervical Stenosis) earlier in 2010. I was 53 years old then. He performed a nerve test to confirm the diagnosis.

According to

Lambert Eaton Myasthenic Syndrome (LEMS) is an autoimmune neuromuscular disorder affecting the presynaptic neuromuscular junction.

LEMS is considered to be a rare autoimmune disease with the primary symptoms of muscle weakness. Muscle weakness in LEMS is caused by auto-antibodies to voltage gated calcium channels at the presynaptic side of the neuromuscular junction leading to a reduction in the amount of acetylcholine released from nerve terminals (See Diagrams on What Causes LEMS? page.)
Patients with LEMS typically present with fatigue, muscle pain and stiffness. The weakness is generally more marked in the lower extremity muscles, particularly of the legs and hip-girdle. See Figure 1
Other problems include reduced reflexes, drooping of the eyelids, facial weakness and problems with swallowing. Patients often report a dry mouth, impotence, and constipation. 

Very rarely these problems can be life-threatening when the weakness involves respiratory muscles.

I have been undergoing infusions monthly for six years. I have treatments for two days consecutively, 50 cc daily. They last four to five hours each. The disease has worsen a little this year. It has affected my neuro-muscular functions, walking and gait. My mobility has worsened, extreme weakness, fatigue and is hindering my driving. I am going from a walker to a wheelchair.

My suggestion to others diagnosed with LEMS is to hang in there. I have been searching for a study for six years. I feel this may be the year to discover alternate treatments for this disease. I hope to be a part of the LEMS-4 Study very soon. There is no known cure for the disease, but I feel I can improve the quality of my life. I just want to feel better and get around with more ease.

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