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A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK
August 7
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A MyAmyloidosisTeam Member

Yes. My hand is raised to sadly say...ME TOO. Have lost 5 teeth, making me dressed for Halloween already. i look very scary. Also, I have NO ZERO SENSE OF TASTE OR SMELL. Dry mouth and there are times I could peel the paint off our walls when I breathe. YECCCHH. Have started initial visits with new dental team since moving. Lots of work forthcoming, so I may be on donut rationing. NO...NO, that's not going to happen.

August 7
A MyAmyloidosisTeam Member

Yes it can, I am living proof of it. I was diagnosed with Geographic Tongue some four years ago but it did not respond to treatment. Normally gone in six weeks when treated, mine is still active today. Only when I mentioned it to my heart specialist did the penny drop and a visit to the Royal Free Hospital in London confirm Amyloid Polyneuropathy ATTR-PN. The pain in my right leg suggests that I also suffer from ATTR-CM, but that is conjecture on my part.

August 7
MyAmyloidosisTeam

Yes, amyloidosis can definitely affect the mouth — and it's more common than many people realize. The most well-known oral symptom is macroglossia, which is when the tongue becomes enlarged due to amyloid protein buildup in its soft tissues.

A MyAmyloidosisTeam member described it this way: "Things are great today — as Show Full Answer

Yes, amyloidosis can definitely affect the mouth — and it's more common than many people realize. The most well-known oral symptom is macroglossia, which is when the tongue becomes enlarged due to amyloid protein buildup in its soft tissues.

A MyAmyloidosisTeam member described it this way: "Things are great today — as long as I don't try to eat, drink, swallow, or breathe! My tongue is in bad shape today 🤣."

Tongue-related symptoms can include:

- Swelling or enlargement
- Scalloped or rippled edges (from the tongue pressing against teeth)
- Yellow or white waxy bumps
- Pain and soreness
- Bleeding
- Loss of taste
- Difficulty speaking, chewing, or swallowing Beyond the tongue, amyloidosis can also cause dry mouth and oral infections. An enlarged tongue is also easily bitten, which can create sores that may become infected.

A team of specialists can help manage these issues, including:

- A dentist for oral infections, dry mouth, or pain (and may suggest special mouth rinses or artificial saliva)
- A dietitian to help with foods that are easier to chew or swallow
- A speech and language pathologist for swallowing or communication challenges

It's worth raising any mouth or tongue changes with your healthcare provider, especially if symptoms last more than a few weeks.

August 7
A MyAmyloidosisTeam Member

I
Don’t know what is worse on the mouth Sjögren’s Syndome or Amyloid, I have both. As soon as your saliva goes your in trouble. With Sjögren’s I had several root canals on top of root canals, Amyloid attacked my gums which loosened the teeth. I am seeing a prosthodontist, they deal implants. Sucking on sugarless sour candy is part o treatment , induces salivation, I never did well on rinses and artificial saliva (this grossed me out) I am going to have some teeth pulled.

August 9
A MyAmyloidosisTeam Member

Thanks Richard seeing my dentist Monday am hope all with you as can be

August 7

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A MyAmyloidosisTeam Member asked a question 💭

A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK