Yes, many MyAmyloidosisTeam members have shared their experiences with macroglossia (enlarged tongue) related to amyloidosis.
One member described: "Mine is swollen all the way back into my throat. If I do not sleep in the proper position, I feel like I am trying to swallow a soft rubber ball. My tongue is easily bitten Show Full Answer
Yes, many MyAmyloidosisTeam members have shared their experiences with macroglossia (enlarged tongue) related to amyloidosis.
One member described: "Mine is swollen all the way back into my throat. If I do not sleep in the proper position, I feel like I am trying to swallow a soft rubber ball. My tongue is easily bitten, becomes very sore from eating anything rough, and has sores along the edge and top."
Another member shared: "I have an enlarged tongue too. It's been like that for two years since I was diagnosed with AL amyloidosis. It's only on the left side of my tongue. Sometimes it's very hard to talk."
A MyAmyloidosisTeam member also noted: "The first thing I noticed was my tongue being swollen." Macroglossia happens when amyloid proteins build up in the tongue tissue. While it's a less common symptom of amyloidosis, when tongue involvement does occur, amyloidosis is actually one of the most common underlying causes.
Common signs include:
- Tongue extending past your teeth while at rest
- Wavy or scalloped edges where the tongue presses against your teeth
- Yellow or white bumps on the tongue
- Tongue pain or bleeding
- Difficulty speaking, eating, or swallowing
It's important to talk with your healthcare provider about your symptoms. They may take a tissue sample to confirm amyloid deposits and discuss treatment options, which can focus on managing the underlying amyloidosis and potentially reducing tongue size if needed.
December 4, 2025
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