Michelle Keogh
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As a newly diagnosed LEMS patient, I’m wondering what some of you have used to determine your risk. I have read about the DELTA-P scores, and the links between some antibodies that may quickly spot lung cancer. My doctor doesn’t think I am at risk, but to put my mind at ease I am going to have a lung, abdominal and pelvis CAT with and without contrast this weekend. Please let me know how often you do these types of screenings. Thanks for any info. Michelle
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Thank you for sharing your experience. 3 years ago I had surgery that was going to be “same day”. I was not diagnosed with LEMS at that point. I thought I was just very sensitive to anesthesia but now wonder if it was LEMS. I had some symptoms of it at the time, so maybe it was in the beginning stages. In any event, I could not “come out of it” for a long time. I would not rouse after and kept going back to sleep. I couldn’t get up out of the bed and was completely exhausted. Needless to say, I stayed over and didn’t leave the hospital until the afternoon the next day.
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I was vaccinated in March/April and will most likely get the booster this fall. Working as a kindergarten teacher exposes me to everything. The good news is that all of the mask wearing and hand washing really cut down on the regular school year colds, flu etc. It is a little scary worrying about the effects of the vaccine but for me I feel safer having the vaccine on board to continue to be at work and out and about. The hard part was that I had more fatigue and leg weakness after the vaccine and it took several weeks for me to feel better after having it.
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Thanks so much for the information. I read that article too! It is so helpful to actually converse with someone who knows what LEMS is and has experienced what I’m starting to go through in the early stages of diagnosis.
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Hi Mary, Please accept my condolences on the loss of your cousin. It is so hard when you have medication sensitivity. A few people I know have similar issues and it’s been difficult for them to get the vaccine too. Michelle 🙂