Author Topic: Just diagnoses  (Read 382 times)

Beausang

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  • Posts: 1
  • Reason for joining: I am being tested for amyloidosis
  • Diagnosed: Just had fat biopsy
Just diagnoses
« on: March 04, 2021, 11:17:38 am »
Yesterday I was informed that I have systemic amyloidosis. Of course I am very concerned. I have not yest had the consultation with my doctor. I still need a bone marrow biopsy.  I was diagnosed with a fat pad  biopsy. I am 72 and in very good health. I do not have any symptoms with the exception of a slightly enlarged tongue. I would love to hear from anyone who has been diagnosed with same and let me know what tests or treatment they gave received.  I do have proteinuria so I know my kidneys are involved.  Please any informations would be so appreciated.  This is a very scary and lonely time.

Miriam Vered

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  • Posts: 554
Re: Just diagnoses
« Reply #1 on: March 04, 2021, 07:15:52 pm »
Welcome to the forum. I'm sorry to hear about your diagnosis and about how you are feeling scared and lonely. Are you in the UK? If so, you should ask your doctors to refer you to the National Amyloidosis Centre. It sounds like you don't yet know what type of amyloidosis you have. The different types of amyloidosis are very different illnesses, with very different treatments. You can take a look at our patient information website - here: https://www.amyloidosis.org.uk/
But please do bear in mind that until you see your doctor and find out what type of amyloidosis you have, a lot of the material you read may not be relevant for you.
Good luck.