Author Topic: Progression of Light Chain MGUS to AL Amyloidosis?  (Read 428 times)

HeatherBreeze

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  • Reason for joining: Query re amyloidosis
  • Diagnosed: N/A
Progression of Light Chain MGUS to AL Amyloidosis?
« on: April 13, 2021, 10:29:24 am »
Hi all

I was diagnosed with Light Chain IgA Mgus in 2015 after referral to haematology when Bence Jones detected in urine by nephrology clinic. (I have CKD 2 as result of childhood glomerulonephritis).  At the time Bone marrow biopsy had 10% clonal cells, faint IgA spike and abnormal lambda light chains - 500 mg/l.  I had kidney biopsy which showed no light chain deposition at that time.

In the past couple months I have had small bruising/petiache on my eyelids, on chest and inside mouth and on tongue. Intermittent at first but now regularly. My tongue also feels bigger with ridges on edge & have bitten it on occasion leaving blood blisters. Both my wrists get sore especially when lifting heavy objects.  My lambda light chains are 500mg/l with k/L ratio of <0.09

I am following this up with my GP & Haematology consultant but also concerned that it could indicate amyloidosis. Is there a chance it could be? I have mentioned it but they want to rule out other things first. Are there any tests I should get done to rule it out?

Thanks!

Miriam Vered

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Re: Progression of Light Chain MGUS to AL Amyloidosis?
« Reply #1 on: April 13, 2021, 11:14:30 am »
Welcome to the forum Heather,
I recommend asking your doctors to refer you to the National Amyloidosis Centre.
Information for referring physicians is available here:
https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/information-referring-physicians

You can also ask your doctors to consult the NAC doctors about your case. Their contact details are available here:
https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre




HeatherBreeze

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  • Posts: 2
  • Reason for joining: Query re amyloidosis
  • Diagnosed: N/A
Re: Progression of Light Chain MGUS to AL Amyloidosis?
« Reply #2 on: April 13, 2021, 12:14:49 pm »
Thanks Miriam.

I will get them to follow up the amyloidosis potential as current thinking seems to be to rule out vasculitis/dermatological/other inflammatory conditions.