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Know your LEMS!
One of the most important things you can do as a LEMS patient, is know the physiology of the disorder. Why? With a rare disease most people, including probably most medical professionals you’ll come in contact with, don’t know what LEMS is. My recommendation is take some time and learn about the neuromuscular junction, and what’s gone wrong because of LEMS. Then, even more important, learn about the similarities and differences with MG (myasthenia gravis). Most doctors, PAs, NPs, and nurses know something about the less scarce MG. Learning about the junction and problems experienced there by both LEMS and MG will go a long way to help you explain it when you need to!
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