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My sister has SCLC and LEMS
Hello everyone. I am happy to have found an online forum R/T LEMS. It is so new to our family. My sister was having a ‘swimmy’ feeling in her head as if she was off balance last summer (2019) which prompted her to go to the ER (which she never would do)-this led to her SCLC dx. We think this actually was LEMS starting. It saved her life. 2 weeks after this she fell and broke a hip-ended up in rehab but was able to get her chemo and radiation with transport. The cancer treatment got her into remission with no LEMS symptoms. Then her cancer returned this past summer (2020) and with it came a feeling of being off balance again; trouble walking certain ways and the ‘swimmy’ feeling in her head. She was still functioning ok. No one mentioned LEMS. Her son and I did research and we came up with the diagnosis. She had antibody testing and an EMG. The day after the EMG her LEMS symptoms were MUCH worse and she could barely get out of bed she was so weak. Long story but she was put on Fridapse (after we recommended it to the neurologist). She now has an oncology neurologist and a neurologist who specializes in LEMS and other muscle disorders. She has gone through so so much. I have lots of questions and will ask on the other forums. Thanks for listening.
Mary
(PS) my sister lives in NY and I live in GA so this is long distance assistance. She has an adult son who has done SO much to assist and research. He lives with her thank goodness.
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1 Reply
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Hey @sweepea32
We’re glad you found us also! I’m sorry to hear that your sister has SCLC but I’m glad they found it and began treating her. I’m sorry the cancer returned too, but glad that she was diagnosed with LEMS and you both got an answer as to why she wasn’t feeling her “normal”. Your sister is lucky to have you to advocate for her and help her with her LEMS journey. We will be happy to answer any questions you have! Look forward to chatting with you.
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