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.
When I was first diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), one of the biggest
challenges was learning how to communicate effectively with my healthcare providers. Whether
it was understanding my symptoms, asking the right questions, or making sure my concerns
were heard, I quickly realized that being a good communicator could make a real difference in
how I managed my care.
Come Prepared and Stay Focused
When you’re living with a rare disease like LEMS, it’s easy to feel overwhelmed during doctor’s
visits. I used to think I’d walk into doctor’s appointments and remember everything I wanted to
talk about; but once I was sitting there, it was easy to forget the questions I wanted to ask.
That’s why I always write things down ahead of time. I can’t stress this enough. I keep a small
notebook and jot down specific questions and how I’ve been feeling since my last visit. This helps
me stay focused during those appointments and ensures I don’t leave out anything important.
The other piece of advice I always tell people is, “Be specific, but don’t overdramatize.” For
example, instead of saying something like, “I’ve never been this dizzy before,” specify the feelings
of dizziness. Clarity like that helps your healthcare provider understand your experience more
clearly and helps them help you faster.
Don’t Be Afraid to Speak Up About Your Disease
Especially when you’re newly diagnosed, it’s helpful to have a support system with you during
appointments. That’s why I always bring my wife with me. She helps me remember what the
doctor said, points out things I might have overlooked, and takes notes, which I’ve learned comes
in handy later when I might have misunderstood something the doctor said.
Having another set of ears in the room can be incredibly helpful, particularly when you’re still
learning how to manage a diagnosis like LEMS. If possible, bring someone who can support you
and help advocate for your needs as a patient.
Build the Right Care Team for Lambert-Eaton Myasthenic Syndrome
Finding the right provider is key, ideally someone who specializes in LEMS or is open to learning
about rare conditions like LEMS. The neurologist who diagnosed me had never treated LEMS
before, but he listened to my concerns and consulted colleagues until we got the right diagnosis.
That kind of partnership is essential.
If you’re not getting the care you need, don’t hesitate to seek out a second opinion or switch
doctors. I always like to remind people to be patient with doctors too, as it may take some time for
them to learn about you, your disease, and your treatment options.
The road with LEMS isn’t always smooth, but with the right healthcare team, it’s a road you can
travel with confidence.
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