How EMG Testing Helped Confirm My Daughter’s LEMS Diagnosis

Columnist Lori Dunham explains what an electromyography test can look like

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by Lori Dunham |

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Last week, I wrote about the unexpected surprise of hearing Lambert-Eaton myasthenic syndrome (LEMS) mentioned on television. In that episode of “The Resident,” a majority of the dialogue centered around the decision to perform an electromyography (EMG) test in order to correctly diagnose a patient.

As Lambert-Eaton News notes, EMG “records electrical signals coming from muscles in response to nerve signals and can help detect anomalies in nerve-muscle communication. EMG typically is conducted in association with another test, called nerve conduction study, which evaluates the ability and speed at which nerve cells send signals.”

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Our daughter Grace was tested and eventually diagnosed with LEMS at 14 years old. After a battery of blood tests, MRIs, CT scans, and genetic testing, a neurologist suggested he perform an electromyography test.

He warned Grace that it would be a painful procedure but assured us that it would go quickly. He placed the electrodes, which contained tiny needles, in various locations on Grace’s legs and upper arms.

Once the test started, the doctor carefully watched the graphs and data pop up on the computer monitor. I watched Grace. She was stoic as the electrodes delivered electric shocks to her muscles.

She didn’t make a sound, but I can remember tears streaming down her face as she lay still and silent on the hospital bed.

The brave patient

The first EMG was inconclusive. The doctor scheduled her for another EMG along with a nerve conduction study. Two weeks later, we were back enduring the same painful process. Grace’s neurologist had never had a patient with LEMS, so he was uncertain about the results.

Finally, he enlisted the help of two specialists from the Mayo Clinic in Jacksonville, Florida, to conduct another EMG and help diagnose Grace.

A final EMG was administered. By this time, Grace knew how painful the test was and was very apprehensive to do it again. She was so strong and brave and went into her third EMG with such a good attitude.

She was tired of all the testing and wanted answers as much as we did. Finally, during the third EMG, the doctors finally verified her LEMS diagnosis. I remember one specialist nodding his head as he read Grace’s EMG scans.

That nod brought me such relief. Of course, I didn’t want my daughter to have a rare disease. But we were so desperate for answers and a way forward that it was a relief to finally have an answer.

Did you undergo EMG testing during the diagnostic process? 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 myasthenia syndrome.


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