• Posted by Price Wooldridge on December 16, 2022 at 7:00 am

    Yes, I get the ‘LEMS voice.’ Do you? Are you aware of the LEMS voice?

    Before my Lambert-Eaton diagnosis, at times I noticed my voice sounds were weak, rough, and reedy sounding. I blew it off, thinking I hadn’t been using my voice much that day, and it just needed more use.

    After diagnosis, I was at a meeting of LEMS patients and sat next to a gentleman LEMS patient. I overheard him speaking, and his voice sounded like mine. That struck me, so I asked him about it. He called it his ‘LEMS voice.’

    That was it! The realization of my speech problems now made sense. All along I had been experiencing changes in my vocal cords associated with LEMS muscle weakness but didn’t make the connection. Now I had, and I always refer to that strident, reedy speech as my ‘LEMS voice.’

    I now consider my LEMS voice as a symptom and signal when my LEMS is affecting me more. It comes and goes without rhyme or reason, or sometimes it comes because I missed a Firdapse dose or two, or I’m having a LEMS flare.

    Do you hear the ‘LEMS voice’ in your speech? Let me know!

    Price Wooldridge replied 1 year, 5 months ago 2 Members · 2 Replies
  • 2 Replies
  • David1949

    December 20, 2022 at 2:17 pm

    LEMS voice would be one of the earliest symptoms I can remember of my LEMS diagnosis. Before I knew anything about LEMS, I knew that some of my vocal patterns were not normal.  Now the answer to what was wrong with my voice is connected my diagnosis. It is usually an early sign of a flair up. My diaphragm is the first muscle to show the effects of LEMS. Raspy, small, weak are words that all describe my LEMS voice.

    • Price Wooldridge

      December 20, 2022 at 3:51 pm

      That’s EXACTLY how I would describe mine as well. And yes, it seems to be a sensitive marker for how my LEMS is doing too. I just have to miss one dose of Firdapse, and I usually start hearing the problem.

Log in to reply.