After 6 years, my daughter changed her LEMS treatment plan

Note: This column describes the experiences of the author’s daughter with Mestinon (pyridostigmine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

My daughter Grace started exhibiting symptoms of Lambert-Eaton myasthenic syndrome (LEMS) at age 15. Her freshman year of high school was spent going from doctor to doctor in search of an accurate diagnosis.

Eventually, her neurologist thought she might have myasthenia gravis (MG). He suggested we start Grace on Mestinon (pyridostigmine), a medication used to treat muscle weakness in patients with MG.

At that point, we were ready to try anything. Grace was falling and tripping regularly. She had lost all ability to go up and down stairs, play sports, play piano, and even sit up in bed on her own. We had high hopes that a medication would alleviate her symptoms.

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Unfortunately, Mestinon alone didn’t seem to do much. Grace said she felt a tad stronger, but we didn’t notice any visible differences. As we continued her diagnostic journey, the doctors encouraged Grace to stay on Mestinon. It was helping her just enough for her to keep taking it.

Finally, the doctor stumbled upon the diagnosis of LEMS. We were thrilled to find Firdapse (amifampridine), a medication approved to treat the condition. The doctor recommended that Grace take Mestinon in conjunction with Firdapse, as some LEMS patients benefit from taking both, so we complied.

Since then, Grace’s health has greatly improved. She’s now thriving and living life to the fullest.

Almost six years have passed since Grace started taking Mestinon. She manages her medications brilliantly and never misses a dose. So, last year, when her doctor suggested she try coming off of Mestinon, she hesitated.

I understand why. It has taken her a long time to get to where she is today. Grace is strong and has returned to many of her first loves. She works and attends college full time. She has enough energy to go for walks with the dog and even run on occasion.

Grace was afraid to alter anything that might trigger some of her original symptoms.

The big decision

She debated over the next few months and eventually decided to stop taking it. Although Mestinon seemed to help a little, the gastrointestinal side effects were extremely bothersome. In addition, Grace was taking more than 11 pills a day, so I was thrilled that she’d be able to reduce that amount.

Grace has now been off Mestinon for more than six months, and surprisingly, she doesn’t miss it at all. Her energy is high, her muscle weakness is minimal, and she no longer experiences any gastrointestinal issues. According to her doctor, Grace’s strength is near normal.

This was a decision Grace had to make for herself. As much as I wanted to see her reduce her daily medication intake, I couldn’t push her to do it. She knows her body best and needed to be in a healthy place, physically and mentally, to give up a medication that she had taken for so long.

For now, we are happy. We continue to monitor her energy and muscle weakness and are grateful she has the option to start Mestinon again if needed.

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.