LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend
discussing their experiences with LEMS. This blog post represents the views of the Ambassador.
Before I was diagnosed, I didn’t know what Lambert-Eaton myasthenic syndrome (LEMS) was—
and the same seemed true for my doctors. The rarity and lack of awareness of LEMS led me on a
long journey of misdiagnoses that made it hard to find the treatment strategy I needed to
manage my disease. My LEMS journey has shown me the importance of seeking the best answers
for my health in the face of misdiagnosis and getting on the right course toward symptom
management.
Finding Answers for Your Health & Getting LEMS Therapy
Because LEMS is a rare disease, when I first started experiencing symptoms, my doctors struggled
to find answers. My rheumatologist thought my muscle weakness was from lupus; my
pulmonologist thought my fatigue was from interstitial lung disease; and my optometrist
thought my double vision was due to astigmatism. When the treatments for these diseases and
conditions failed to improve my symptoms, I had to seek second opinions and push for answers.
After meeting with so many different specialists, I felt like there was no end in sight. I even
thought to myself, Am I nuts? But pressing for better answers eventually led me to an eye doctor
who was familiar with LEMS, and who ordered the blood tests that led to my diagnosis.
I’ve seen Lambert-Eaton myasthenic syndrome baffle doctors, either because it’s so rare or
because it’s so hard to treat. My big tip for people who are questioning whether they have LEMS
and believe they’ve been misdiagnosed is to ask their doctors for blood tests, no matter how
uncommon the tests might seem. It may have taken longer for me to get diagnosed had my eye
doctor not ordered those blood tests for me. I also want patients who think they may have been
misdiagnosed to know they have to advocate for themselves. You have to be proactive about
getting the treatment options you need to start managing your symptoms, and that starts with
finding the right diagnosis.
Using Online LEMS Forums for Care Tips, Treatment Options, and Support
After receiving my LEMS diagnosis, I continued to struggle with managing my symptoms
because the disease isn’t well-known. Even my neurologist had no idea what LEMS was when I
told him about my diagnosis, and we’ve had to learn about it together.
One of the greatest resources I’ve found for health tips has been online forums and communities
for people with LEMS. I’ve learned so much from other patients’ stories and tips because they’re
living the same battle I face every day. These forums also help with the loneliness that comes with
having such a difficult and rare disease. My loved ones can try to understand my experience, but I
often still feel stranded in a wheatfield because of LEMS. But there’s strength in numbers, and I’ve
found that strength in these online LEMS community groups.
Setting Alerts and Calendar Updates to Track Your LEMS Treatment
One of the things I didn’t anticipate with LEMS was how hard it’d be to stay on top of my
treatment. Of course, I’m no spring chicken anymore, but between having to take my medicine
three times a day and all my doctor’s appointments, it’s a challenge to keep track of things. To
help with this, I set alerts on my phone to remind me of important things. My phone always gives
me a ping when it’s time to take my medicine, and it doesn’t stop until I do it. Missing a dose can
mess up my whole schedule for the day, so avoiding this problem makes life that much easier.
Putting all my appointments with my neurologist has also been helpful. If you want to get better,
you have to be vigilant about it, so you’ll never want to miss out on a doctor’s appointment to
track your progress.
Accepting Handicap Aids and Making Your Environment Suit You
With LEMS, I’ve learned the importance of designing my home to work for me. Because of the
muscle weakness in my legs, I moved into a house with no stairs, so I don’t have to worry about
crawling up them anymore. I also have handicap aids around the house to accommodate the
decrease in my muscle strength. I have two grab bars in my bathroom to help me get in and out
of the tub, and I keep my rollator with me everywhere I go to get out of chairs. It’s got these
wheels that lock it in place, so I can use it to rock back and forth to get the momentum I need to
stand.
Using my aids might look comical, but you have to embrace your sense of humor with LEMS
because you never know when your muscles are going to work. Even my glasses may look silly
because of the prism they have to help with my double vision, but I can see well enough to drive
now, and the independence that gives me means the world. I’m someone who likes to go out and
do things. LEMS gets in the way of that. Even though I still can’t do all I’d like to do, I can at least
enjoy my life a little more by embracing my handicap aids.
No matter what difficulties you face on your LEMS journey, be proactive and find ways to manage
your symptoms that work for you.
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