Lambert-Eaton News Forums Forums Living With LEMS How do you describe LEMS to friends and family?

  • How do you describe LEMS to friends and family?

    Posted by Ashley on May 15, 2024 at 12:29 pm

    There are countless times that I have had to explain what exactly LEMS is, whether it be to a friend, coworker, family member or even a medical professional who is unfamiliar with LEMS.

    I’m sure you all experience this too!

    My go-to explanation is that my body attacks the phone line between my nerves and my muscles causing a communication breakdown and difficulty moving.

    Describing some of the other symptoms I struggle with like brain fog and extreme fatigue is harder for me to explain. I feel that sometimes my description is lacking or doesn’t fully convey the depth of fatigue or the frustrations that come with brain fog.

    Recently, I found an article on Myasthenia Gravis News that I found to explain things a little better.

    Shawna Barnes, author of “The Whispered Roar” column on our sister site, Myasthenia Gravis News has three analogies to describe life with Myasthenia. The first two analogies are for describing the neuromuscular junction and the never-ending fatigue we feel.

    She mentioned how she can tell when others “eyes glaze over” as soon as she begins describing the “science behind Myasthenia” and I’ve experienced that personally more time than I can count.

    <strong style=”background-color: transparent; font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>So I’m wondering, How Do you explain LEMS to others?

    Have you come up with a description that doesn’t cause the dreaded eye glaze?

    Ashley replied 1 month, 2 weeks ago 3 Members · 4 Replies
  • 4 Replies
  • Morgan

    May 17, 2024 at 3:39 pm

    That’s a good question and a great way of explaining it, Ashley!

    I usually ask them if they’re familiar with Myasthenia Gravis? If so, I tell them it’s similar but my weakness is lower body not upper. I don’t have any ocular, swallowing or speech symptoms. My symptoms are difficulty walking, poor balance and fatigue. It feels like I’m walking with sandbags attached to my legs.

    If they’re not familiar with MG then I usually just tell them the symptoms. If they ask questions about LEMS then I’ll tell them my muscles aren’t able to receive the signal from my nerves to tell them to contract. It’s like the pitcher can’t pitch.

    At that point they usually just shake their head as if they understood. I try not to go too deep unless they ask more questions. As you all know, it can be really confusing especially when you get too technical like antibodies.

  • Ashley

    May 20, 2024 at 9:21 am

    Hey @Morgan !

    That’s also a great way of explaining it! I love the sandbag analogy!

    I agree that keeping it simple is the way to go as well! It can get confusing fast! Thanks for sharing with us! 🙂

  • Alan Stone

    May 22, 2024 at 7:15 pm

    i say some of my infection fighters went rogue and are blocking the good ones from doing their immune work as in, “Firdapse is blocking the blockers”.

    • Ashley

      May 28, 2024 at 9:44 am

      Hey @Alan Stone Thanks for sharing with us! That’s a good way to describe it as well!

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