Anyone any information on amyloidosis please.

[Jollyjo8]

I have a lot of symptoms and I’m waiting for heart monitoring.

Hoping you are diagnosed with something a lot less serious, and something that’s easy to resolve.
A family member was diagnosed many years ago. The first thing we noticed was his speech changed a little due to tongue swelling. This was followed by swelling of the ankles weight loss. He was very late stage when diagnosed.
There were a few famous people here in Ireland who come to mind also. Singer Christy Dignam and politician Martin McGuinness were both diagnosed with this condition. There have been links to Co Donegal in this country.
Wishing you the very best, I hope all tests come back negative

Hello jollyjo8, I don’t have it but family members do… I have the gene so am more likely than not to develop the condition as I age, as I understand it.

Are you referring the inherited type or another type of amyloidosis?

I’ve been through the testing, it’s excruciating but i try to focus on anything but the tests. Easier said than done I know.

May I ask your symptoms?

Thank you for your replies. I have low resting heart rate that goes high on exertion. A swollen tongue dry lips that can be tingling. I’m coeliac and endoscopy after one year showed reactive gastrophy in stomach and mild duodenitis. Constipation. Weight a little up and down. Slight swelling in one ankle I had an unprovoked blood clot in 2024. Mild intermittent pressure at front of head.

hi OP.

The digestive issues, neuropathy and heart rate may or may not be significant. As you probably know the typical symptoms are unhelpfully broad.

Are you being seen by the GP or the National amyloidosis centre in London?
They may ask you for family history of relevant symptoms.

good luck I know its stressful

Thank you. I’m waiting for heart monitoring.

@Jollyjo8 How are you getting on? Hope you’re doing ok.

Thank you very much for thinking of me. Heart monitor arriving in post. Waiting to hear about a possible private haematology appointment.