If you’re recently diagnosed with LEMS, how in the world are you going to tell others?! The first step is to understand for yourself how LEMS works. Understanding what has gone wrong with you is the first step before you can explain it to your family and others. Ground zero for me was when my neurologist said, “You’ve got Lambert Eaton.” My first action when I got home was to pull up the Internet on my computer and start the Google searching. How about you? What did you do first, after hearing those words?
Yes, I went home and Googled Lambert Eaton Myasthenic Syndrome. I’m still learning little by little. I believe it’s so important for our doctors to be educated about LEMS. Emergency rooms should be ready to handle a disease that’s very rare.
Jamie, good to know you’re making the effort to educate yourself. Great resources are this forum and the Lambert-Eaton News stories. Firdapse.com also has great info. I also participate in a couple of LEMS Facebook special interest group pages.
And unfortunately, I’ve been through the ER too much. We become educators for hospital staff too. The magic word for them is telling them you have a “myasthenia” problem, like Myasthenia Gravis. Most of them get that.
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