[lindsayParticipant]

Hi all,
I’m pleased to be part of somewhere that I can share and become more informed.
I was referred to Haemotolgy with a haemoglobulin level of 46 and a kappa light chain that had gone from 44.3 to 64.6 ( over 1 month). When I saw the consultant he said my paraprotein score had gone from 18 to 17. My mum also has MM.
He said that because my pp was over 10 I was Stage 1 MM and not Mgus.
Two weeks later my PP was 19.8 and I had a clear PET scan ( ordered because of discomfort in my hip and a growth in my ear). He then re-diagnosed me as Mgus. My husband and I left on a tide of relief but questions had settled in by the time we hit the car park.
My question to you all is: is it common / correct that I can be Mgus with a pp score of 19.8? To me, that seems more like Smouldering Myeloma? Is it weird to change a diagnosis from MM down to Mgus ?
I would be interested in your thoughts and opinions. Thank you!

[Anonymous]

Hi Lindsay, I’m classed as Smouldering with a pp 9 and less than 2% in plasma cells been five years this August, it just shows how different we all are. The Myeloma nurses are fab to ring or email with questions .. stay positive it’s not easy but honestly it’s better than worrying all the time cheers Helen

[lainyParticipant]

Hi I have just been diagnosed with smouldering myeloma with a ppmof 7 and 15-20% plasma cells on my trephine biopsy. So am being monitored regularly but have a lot of joint pain especially hip and back. So I am confused as I thought smouldering was asymptomatic. I also get very tired so not sure what to make of all this.

[lindsayParticipant]

Thank you Lainy and Helen.
It’s all so individual, isn’t it? I hope we can all find ways to feel less confused and more informed!
Best wishes to you both.

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