Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyAmyloidosisTeam Member asked a question 💭
Boulder, CO

I have worsening macroglossia. I go to Long Covid clinic where possible diagnoses are Mast cell. Definitely have histamine intolerance but doc wanted to rule out Amyloidosis and sent me to ENT for tongue biopsy. ENT said probably not Am. Because swelling is variable. Said tongue biopsy is just of one spot and wants MRI with contrast dye. Problem is Contrast dye can cause anaphalaxus is some MCAS patients. I”ve googled and can’t find best diagnostic method.

February 8
 · 
Be the first to react
MyAmyloidosisTeam

How is amyloidosis in the tongue diagnosed?

A tissue biopsy is the standard way to diagnose amyloidosis in the tongue. Your healthcare provider takes a small tissue sample from the tongue and examines it under a microscope to check for amyloid deposits. This confirms whether amyloid proteins are causing the swelling.

It's Show Full Answer

How is amyloidosis in the tongue diagnosed?

A tissue biopsy is the standard way to diagnose amyloidosis in the tongue. Your healthcare provider takes a small tissue sample from the tongue and examines it under a microscope to check for amyloid deposits. This confirms whether amyloid proteins are causing the swelling.

It's worth noting that macroglossia from amyloidosis usually develops slowly and painlessly over time, rather than coming and going. The edges of the tongue may look wavy or rippled from pressing against the teeth.

Since many conditions can cause tongue swelling, the biopsy helps distinguish amyloidosis from other causes. If amyloid is found, additional testing can determine which type of amyloidosis you have. Given your concerns about contrast dye and potential reactions, it's important to have an open conversation with your healthcare team about the risks versus benefits of different diagnostic approaches. They can help weigh whether the biopsy or imaging is more appropriate for your specific situation, especially considering your histamine intolerance.

If the variable swelling pattern doesn't fit typical amyloidosis presentation, your doctors may be considering other causes. However, only testing can definitively rule out amyloidosis as a possibility.

February 8

Related Questions

View All
A MyAmyloidosisTeam Member asked a question 💭
Blackpool, UK