A friend’s journey with Lambert-Eaton myasthenic syndrome

None of us want to become a part of a statistic like the number of people with Lambert-Eaton myasthenic syndrome (LEMS). Odds are that most of us won’t, considering that there are only an estimated 400 known cases of LEMS in the United States. The disease’s prevalence in children is even more minute, with just over a dozen documented cases worldwide. What are the odds?

As a mother to a teenage daughter with LEMS, I am always interested in connecting with other young adults who are living with LEMS. It can be a lonely journey. But we are buoyed by community and have the strength to face each day’s challenges.

When I met Payton Hanson, a 23-year-old who has LEMS, in a Lambert-Eaton LEMS Family Association chat, I was anxious to hear more of her story. We had an online discussion about her life, and excerpts follow below.

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LD: Can you tell us a little about yourself?

PH: I am a senior at Concordia University in St. Paul, Minnesota. Before my LEMS diagnosis, I was extremely active. I was a collegiate athlete on the softball team and lifted weights, often dead lifting over 300 pounds.

What were your first LEMS symptoms?

I first noticed LEMS symptoms in September 2022. I started experiencing excruciating muscle cramps. By October, I was no longer able to lift weights. By November, I could no longer squat free weights. I began to frequently fall. Oftentimes, my legs would just give out from under me.

One morning in December, I was unable to lift my legs to get out of bed. We immediately went to the emergency room, and I was hospitalized for five days.

How you were diagnosed?

They couldn’t figure out what was wrong with me. Some doctors believed I was making it up. They did find that I had COVID-19, so they treated that and sent me home.

I saw upward of 25 doctors before I was finally diagnosed with LEMS by the head of neurology at the University of Minnesota. I was only his second LEMS patient. Before getting to a diagnosis, I had a spinal tap, three electromyography procedures, and endless vials of blood work. I was diagnosed in September 2023.

How are you treating your LEMS?

I take two 10 mg pills of Firdapse (amifampridine) five times a day; Mestinon (pyridostigmine) four times a day, at 60 mg a piece; and have intravenous immunoglobulin therapy every three weeks. I also do acupuncture and cupping once a week.

How has your life changed because of LEMS?

My LEMS diagnosis was heartbreaking. I had to grieve what my life looked like and what my reality was going forward. Oftentimes, my parents would find me almost catatonic, staring at the wall because I had no energy to even turn my head.

LEMS has not only affected my health but all aspects of my life. I’m in a wheelchair 50% of the time. I can walk with a walker for about six to 10 minutes. I use a lift chair at home that my insurance wouldn’t pay for. Expenses like these have taxed our family financially.

Prior to the onset of symptoms, I was living independently, in my own apartment. After I got sick, I had to stop working and could no longer afford to live alone. Before moving back home, my dad had to quit his job to come help me every day. I lost all independence. I felt like I went from being a 23-year-old back to being a 15-year-old with the amount of independence I had to give up.

Has anything good come from the struggle you’ve faced with LEMS?

The most positive result of having LEMS has definitely been the deepened relationship I have with my parents. I have spent so much more time with them now that I have LEMS and rely on them daily. It has strengthened our relationship tremendously.

What would you tell someone who is newly diagnosed?

You will learn quickly who your true friends are. I lost a lot of friends because of the limitations placed on my life. However, out of that darkness, I found faithful “forever friends” that stuck by me as close as family.

Realize that it will take time to find your new reality. Be patient and positive. Advocate for yourself and surround yourself with those who will advocate for you as well.

I found that many doctors didn’t take me seriously. Look for doctors who listen and care for you so that if they can’t help you, they can at least point you to doctors who can.

I believe competitive athletics helped prepare me to push through the difficult times. Find what motivates you to face another day and hold on tightly to that motivation.

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.