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LEMS Weakness at Night?
Over a year ago I began having weakness in my left shoulder and right hip overnight. I spoke with my neurologist about this and we added 180 mg time-release Mestinon to try and cover the overnight period. A dose of Firdapse only lasts about 4 hours, so I’ve lost its good effects after my last dose at 8-9 PM. All I have going for me is the Mestinon while I sleep.
Do you have an overnight weakness? And how bad can it get for you? Lately, I’ve been having more profound weakness in my left shoulder overnight. When it gets really weak, I can’t lift it up to turn off my CPAP machine. And when the muscles get extremely weak, I get shots of pain, because there is little support for that joint. I brought this up again to my neurologist, and here’s what she said, “LEMS weakness would not be painful nor would you notice it while sleeping during the night.” Honestly, I’m not sure what to do here. Maybe she’s right? I don’t think so. Because it comes and goes, it’s LEMS muscle weakness from my perspective.
At this point, maybe I need a new neurologist.
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