How a simple tendon reflex test indicated a major problem
My daughter's absent reflexes led us to a LEMS diagnosis

No two stories are quite the same — particularly among those living with Lambert-Eaton myasthenic syndrome (LEMS). When our daughter Grace was diagnosed with the condition at age 15, I was desperate to find a story similar to hers. I needed to see what LEMS looked like in someone else’s life.
Grace’s health deteriorated quickly. She went from playing basketball to using a wheelchair in the span of three months. Her joy was playing the piano, and she’d been taking lessons since she was 6 years old. Yet during the onset of LEMS, she was so weak she couldn’t play. Grace lost weight rapidly and gagged on her food regularly. There was no way she could bathe herself or even sit up in bed on her own.
Her life changed dramatically overnight.
The LEMS community was pivotal in my quest to understand what the diagnosis meant. Many people generously shared their stories, what treatments worked or didn’t work for them, and what their day-to-day lives looked like.
One symptom that many people described was decreased or absent tendon reflexes. Grace, too, had lost her reflexes. For years, I’d taken my children to regular appointments, never questioning why the doctor checked their reflexes. I just took for granted that their little legs and arms would respond when the hammer came down. I never wondered what could possibly cause a child not to have reflexes.
A small test yields big results
It was only after Grace was referred to a neurologist who checked her reflexes and didn’t find any that I realized the importance of that test.
I watched and willed her body to jerk when the hammer hit her ankle, knee, and elbow, yet there was no movement. That seemingly benign reflex test was proof that something was seriously wrong in our daughter’s body.
I’m happy to report that after five years of treatment and medication, Grace’s reflexes are back. At her last neurology appointment, she not only presented with reflexes, but the doctor declared her strength to be nearly normal for her age.
It’s taken Rituxan (rituximab) infusions every six months; 60 mg of Firdapse (amifampridine), 180 mg of Mestinon (pyridostigmine), and 150 mg of Imuran (azathioprine) a day; and five years of physical therapy for Grace to get to where she is today. With a generous mix of time, hard work, modern medicine, and a positive attitude, Grace is well on her way to living her fullest possible life, even with LEMS.
Have you experienced reduced or absent tendon reflexes because of LEMS? Please share your experience in the comments below.
Note: 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. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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