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 Lems.com:
|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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