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Swallowing Problems with LEMS and MG
Dysphagia or swallowing problems is a shared symptom between Lambert-Eaton and our “sister” disorder, Myasthenia Gravis. At times I’ve had swallowing problems. Have you?
On occasion, I’ve had difficulty getting food down, requiring a few extra sips of liquid and patience. I’m also wary of large pills which can pose a choking hazard. I take a medication, Colestipol, which comes as a very large pill or powder. After a few scary incidents, I dropped the pill in favor of the powder form. The other solution could be to split a pill, but the Colestipol tablets are hard and not splittable.
MG is considered a “top down” disorder so dysphagia is common. Here’s an article on testing they use in diagnosing MG based on this symptom. -
6 Replies
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Yes, my swallowing problems became scary and even my voice was changing from the weakness in my throat that I finally relented and started IVIG. Prior to IVIG, I often would have food get stuck just after I swallowed it and it would very slowly then painfully move down my esophagus. When I started having a hard time swallowing water and my small DAP pills, it got scary. I’d have to concentrate hard to try to swallow water. It was crazy how my brain knew what I wanted to do but my swallowing reflex just wouldn’t happen. My neurologist sent me to a speech pathologist for the diagnosis of dysphagia and the speech pathologist noted that eating or drinking anything, my throat was doing a “double swallow” trying to get things to move. I didn’t even realize I was doing that. It was this last symptom that brought about my relenting and starting IVIG- I had held my doctor off for over a year due to my fear of side effects. Thankfully, since starting Ig, swallowing has been much better and my voice sounds like myself again, unless I’m tired. I do find my large Fish Oil supplements challenging but they at least don’t stop moving the way I experienced with food.
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Glad you brought up the vocal cords being affected as well. Anecdotally, it seems dysphagia and “the LEMS voice” often go hand in hand. I also experienced voice problems, sounding weak and reedy, especially early on, before fully on my treatment plan.
If other’s have experienced both dysphagia and “the LEMS voice”, please let us know. How common is it?
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I too have dysphagia and atrophied vocal cords from LEMS. 😿
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It seems to be relatively common amongst LEMS patients.
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I walked down the same road. I lost alot of weight not wanting to risk blockage. It got out of control. I ended up with a feeding tube. Im able to swallow better now with treatment. Jumping on this issue right away is really smart.
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Yes! I’m so glad you were proactive. It’s so important to stay on top of symptoms and react accordingly. Glad you’ve seen improvements!
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