Author Topic: Diagnostic timescale  (Read 442 times)

gomin

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  • Posts: 1
  • Reason for joining: amyloidosis patient
  • Diagnosed: November 2020
Diagnostic timescale
« on: January 17, 2021, 04:10:08 pm »
Sorry if this has been covered before I have tried searching the forum which I have just joined.
Last year a blood test for something unconnected revealed problems with my kidneys. Fast foreword a couple of months and I had been diagnosed with CKD stage 3 and had a kidney biopsy taken resulting in a diagnosis of Amyloidosis. My Nephrologist is quite blunt and informs me that at the current rate of deterioration I will need Dialysis within 12 months and that my tissue samples have been sent to the NAC for typing. That was 2 months ago and I am left worrying about the type of Amyloidosis I have and Dr Google is not helping my anxiety. Does anyone know how long the NAC takes to give a decision of the results or has Covid closed everything down?
Thank you

Miriam Vered

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  • Posts: 553
Re: Diagnostic timescale
« Reply #1 on: January 17, 2021, 09:45:35 pm »

Please send me a personal message with your name and date of birth and I can try to check the status of the typing request. Were you yourself referred to the NAC? If not, you can ask your doctor to refer you - see https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/information-referring-physicians
At the moment, NAC clinic visits are taking place by telephone or video calls.
Also, you can ask your doctors to contact the NAC doctors to consult regarding your case. Contact information is available here - https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre