My husband was diagnosis Light Chain Monoclonal gammopathy of unknown significance (MGUS) last month. We are just getting information about this and have many questions. My main concern is why scans or biopsies have not been done, since my husband was initially diagnosis after months of monitoring blood work that had increased Lambda light chains in blood, Bence Jones Lambda positive urine, anemia, decreased white blood cell and platelets, and severe back pain, He is now having significant kidney issues including swollen legs. I feel we need a second opinion?
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Hi @Tyll4ever Welcome to our forum, just reading your post and it sounds as if you have got a lot of information and therefore a lot of questions for your husbands medical team.
Perhaps now is your opportunity to both sit down and write all your fears, questions, symptoms and practicalities for your husbands next appointment.
If you do not feel that you get satisfactory answers, I find being pleasantly assertive helps me, and the way forward then you might consider getting a 2nd opinion.
I have found there is a lot of feeling of waiting around and not knowing, which I find is anxiety making for me and family members. I reckon good communication can help and that often people deal with things differently, there is no right or wrong.
I have found that diverting my mind can help and fresh air and appropriate exercise.
Look after yourselves and please do keep posting how you both are.
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Hi @Tyll4ever,
Thanks for reaching out to us and welcome to our forum.
Sorry to hear about your husbands diagnosis. It is only natural to have many questions and concerns. It is understandable that you are worried.
With Monoclonal gammopathy of unknown significance (MGUS), not everyone needs to have a bone marrow biopsy or scans performed. Often, a diagnosis can be made on blood tests only. I have enclosed a link here to our information which explains this in more detail Tests to diagnosis MGUS.
As your husband is experiencing kidney issues with swollen legs I would suggest getting in touch with the haematology team or your GP as this needs to be reviewed.
If it would be helpful to talk this through in more detail, we would be very happy to chat to you on our free nurses support line on 0808 2080 888. We are open until 4pm today and tomorrow from 10 am until 1pm.
Take care
Fiona ( support services nurse)
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