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  • Shoulder weakness, yes it’s LEMS

    Posted by price-wooldridge on December 21, 2020 at 7:00 am

    Well, it’s back. Some months ago, overnight, I would wake up and be unable to lift my left arm. When it was especially weak, there was pain, as other muscles were unable to assist enough. The extreme weakness resolved within about 10 minutes, once I was up and moving. It’s the craziness of LEMS! At my next neurologist visit I reported this new weakness, and she said she didn’t think it was LEMS. Yes. It is. This is a good example of my diagnosing neurologist not really having much experience with LEMS patients or the disorder. We’re so rare, very few do. Out of this appointment I did get on Mestinon 180 MG time release overnight, and it seemed to help. The shoulder weakness went away. But, now it’s back. Despite a recent IVIG and being on all my meds, the weak muscles have returned. It’s not as bad, but I feel it. It comes and goes, but I know it’s there. On a recent walk, my left arm had no tone, and instead of swinging naturally, it just dangled at my side.
    A signature sign of LEMS is hip leg weakness. I don’t hear people talk so much about profound shoulder weakness. Let me know if you’ve experienced anything like this!

    joanne-evans replied 3 years, 3 months ago 1 Member · 1 Reply
  • 1 Reply
  • joanne-evans

    December 22, 2020 at 2:26 pm

    Yes I have shoulder pain and weakness. I haven’t talked to my neurologist about it but I am seeing a physiotherapist. I had thought it was injury from pulling and pushing myself because of my weakness. Maybe it’s LEMS. Thank you for that information.

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