"The light chain or Bence-Jones myelomas are the most likely to cause kidney damage and / or lead to deposits of the light chain component in the kidneys or other organs, resulting in a condition known as AL amyloidosis or light chain deposition disease" Myeloma UK
FL was called for his ultrasound yesterday. I was at work and to be honest didn't think much would happen at this appointment, since the doctor had said it was unlikely to show anything.
The radiographer greeted FL : Ah yes, you have Myeloma and there is an issue with your liver.
FL: My liver? No just Myeloma.
Radiographer: Err... your latest blood tests show an issue with your liver...
How absolutely fabulous!
FL was rather cross to be told something apparently important in such an offhand way. I don't think he spoke again during the examination. He was told the ultrasound results will be with his GP in about 2 weeks.
For my part, I am cross that I wasn't there to hear exactly what was said - and ask what this "issue" might be and how it was showing itself. Could this be the reason for his abdominal pain?
Sweet, sweet joy.
A new symptom to explore on the internet.
Has he got AL amyloidosis? When present in the liver is is "commonly associated with parenchymal atrophy". I didn't know what that meant. So I looked it up. It affects brain function and causes sudden seizures.
I am jumping to conclusions, but it fits. Bugger.
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5 comments:
Like you said, you might be jumping to conclusions or as Toni would say, barking up the wrong tree. I really hope so. :-)
I looked in my Myeloma UK AL amyloidosis booklet (I got it because a chap at yoga has it along with myeloma - his deposits are in his lungs though) and it was bugger all assistance basically. I want you to keep one foot on the floor at all times this allows for a hop but no jumping!
Ok... Top of the prayer list for 2 weeks.. Then back down the list OK? That was a crazy way to find out about something like that! I could tell you to relax and see what the test show...But I wouldn't so try to get through the next two weeks and keep busy.
Not a good professional way once again, to depart any news like this in such a casual mannner. I can feel my hackles rising!!! I shall pray extra hard that the results are fine and nothing bad is found and also it's rather too long, two weeks to wait for the results are they on a go slow up there?
Try not to worry, I know easier said than done x
My first reaction is bugger indeed! But as others have said don't jump to conclusions. But it was a pretty poo way of telling him. If only the right hand knew what the left hand had said!!
Be thinking of you, useless to say, I know, but try not to worry, and I hope both have a good rest tpnight.
Love x
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