Author Topic: Consultants  (Read 1487 times)

AnnR

  • ***
  • Posts: 126
  • Reason for joining: Recently diagnosed with cardiac amyloidosis
  • Diagnosed: April 2017
Consultants
« on: June 18, 2020, 08:59:21 pm »
Just come out of hospital after having a problem with plummeting potassium levels. Had to have an infusion and meds have been changed. Great care from my local hospital especially one of the junior Drs who took time to do a bit of research to see if there might be reasons not related to diuretics causing the problem. Thankfully tests negative. However the consultant cardiologist asked me if I had had the family checked as he stated there was a genetic component. I said I understood that was not the case for AL but he insisted that there is. He also insisted that amyloid deposits could be anywhere including the brain. I do not expect doctors to know much about the condition as it is relatively rare but I wish they would not pronounce as if they are experts. My usual cardiologist and haematologist are brilliant at liaising with the NAC.

Miriam Vered

  • Administrator
  • *****
  • Posts: 554
Re: Consultants
« Reply #1 on: June 18, 2020, 10:01:45 pm »
Hi Ann,
Glad to hear you're feeling better. You're right on both counts-
AL amyloidosis is not a hereditary disease. Family members of people diagnosed with AL amyloidosis are not at increased risk of getting this condition.
In AL amyloidosis, amyloid deposits may affect any part of the body except for the brain.

When you encounter doctors who are interested in learning more about amyloidosis, it might be worth suggesting they take a look at our NAC patient information site - https://www.amyloidosis.org.uk/
« Last Edit: June 18, 2020, 10:06:12 pm by Miriam Vered »

AnnR

  • ***
  • Posts: 126
  • Reason for joining: Recently diagnosed with cardiac amyloidosis
  • Diagnosed: April 2017
Re: Consultants
« Reply #2 on: June 18, 2020, 10:18:12 pm »
Thanks Miriam. I feel so strongly about this that I have written the consultant a very polite letter thanking them for their excellent care but have rereferred him to the NAC website and copied relevant sections from FAQs section. If I had not been so well informed I might have been really upset to be told that my children and grandchildren could be affected.

Joca

  • **
  • Posts: 64
  • Reason for joining: AL amyloidosis patient: heart, bowel, neuropathy
  • Diagnosed: July 2015
Re: Consultants
« Reply #3 on: July 07, 2020, 01:08:49 pm »
Consultants! So many like to appear omniscient butmedicine is such a complicated area that even within their own speciality they have a lot to learn. I went to see a dermatolist last week about a chronic toe ulcer and she did not quite believe I am not diabetic an that my leg neuropathy and heart failure are caused by something else entirely. Luckily my wife could explain. (I am completely deaf and thus ignored entirely by some consultants although not all).
John