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I’m talking with my “LEMS Voice”!
Yes indeed, there is a “LEMS voice”, and I’ve got it! What is a LEMS voice? For me, it’s reedy, raspy weak vocal sounds. Sadly, this happens all too frequently, especially when my LEMS is bad, or late in the day, when I’m more rundown. I didn’t realize what it was until I sat next to another LEMS patient in the summer of 2018. He was talking and told the group he was speaking with his LEMS voice. It sounded exactly like I did!!! Ahha!!! That’s what it is, and I have it too! Some of you may know I’m the “voice of LEMS” with BioNews. I’m on deadline a couple of times a week to provide Flash Briefings for Lambert-Eaton News. Sometimes the voice is smooth, other times not so much. You may be able to detect my LEMS voice if you listen carefully. More and more I’m going into my recording booth earlier in the day, when my core strength is better and the LEMS less evident. Do you notice whether you might have the LEMS voice at times?
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4 Replies
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I definitely have “LEMs voice” but it developed from paralysis of one of my vocal cords due to the LEMs. It does worsen with frequent talking, progression of the day, and/or how bad my symptoms are that day.
Tescha
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I had my LEMS voice long before I was diagnosed. I used to always go hoarse or barely be able to talk in a whisper after doing my multiple public health presentations a week in my 30s. People would ask what was wrong and I had no idea. There was talk of doing an upper GI to see what might have been causing it; but I always put it off due to a high co-pay.
Once I had my LEMS diagnosis, when my swallowing started to become severely compromised and my voice got MUCH deeper, my neuro insisted I start IVIG to get my LEMS better managed. The first proof of the benefits I had from IVIg was regaining my ability to swallow, taste, enjoy food textures, and I got my normal voice back!
Tescha, I’m sorry one of your vocal chords is paralyzed from LEMS. I pray one day something works to help you as much as treatment has helped me!
Price, I’m so proud of how well you do with recording the flash briefings. You do a fabulous job and I know that takes a lot of management and planning on your part. I’m always amazed and proud of how fabulous you make my columns sound. Thank you!
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Wow I just found out from my pulmonary function test that I have a variable extrathoracic obstruction causing me to be short of breath and have a tight feeling in my throat. He said it was possibly from something called vocal cord dysfunction. I Google searched and found this and ….well interesting!! @tescha </p>
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@pastora Amanda I hope, with this understanding gained from your pulmonary function tests, your pulmonologist can get you a good plan to deal with this.
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DD
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