I've had LEMS for over 6 years without developing cancer. My symptoms have progressed terribly. My neurologist in Huntsville only just officially diagnosed me but he said based on my old labs and tests my previous neurologists apparently didn't know what LEMS was. He told me he'd never seen a case like mine either though going on for so long without cancer. I'm not sure what to make of it. He's going to work on getting me approved for the new medication and I guess I'll go from there. Has anyone else experienced LEMS like mine? Right now I don't have private insurance so my options are limited.