MGUS worried about daughter

Worried you might have a blood cancer?
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My daughter was diagnosed at 19 with monoclonal gammopathy of unknown significance (MGUS) in 2019. She is a type 1 diabetic and was recently diagnosed with IGA Nephropathy and diabetic Nephropathy after high protein and microscopic blood in her urine since 2019 even through her A1C has always been in good range. The Kidney specialist seems to think she’s just prone to get certain diseases. We see a hematologist, every three months for blood work and 24 hour urine test. She has low red blood cells, low, hemoglobin, and low hematocrit that is ongoing since 2019. She has fatigue, pale skin, she gets dizziness, pain her ribs and back pain, arms and legs get random pain also, fast heartbeat , lump nodes behind ears are always enlarged and headaches. Finally got the doctor to a Bone marrow biopsy confirmed monoclonal gammopathy of unknown significance (MGUS) in 2022 with plasma cells at 5.6 %. No lesions in 2020 pet scan. No monoclonal proteins in blood. She does get bence jones proteins off and on in her 24 hour urine. This last blood draw on 2/13/25 her IGA is high at 415 and her gamma globulin is 1.7 which is high normal. Just wondering why the one immunoglobulin is high but shows no monoclonal and what this might mean. I worry constantly about her health and possible cancer happening with her being so young. I just just feel like I don’t get answers from her doctor.

Thanks
Murphy

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Hi @Murphy I am so glad you have found us and your love and care for your daughter really shines through.
It is so hard seeing someone you love being so unwell, you are so powerless.
You say that you do not get answers from her doctor.
You have clearly outlined her medical history and your questions.
I f you would like to talk yo someone the Blood Cancer UK support line is there for you on 0808 2080 888
Perhaps you might ask for a referral or second opinion.
Alternatively, if it were possible, you might consider shopping around for a private opinion.at your cost.
Please do let us know how you get on and be kind and look after yourselves.

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I’m going to link you Myeloma UK GP guide for monoclonal gammopathy of unknown significance (MGUS)

It may help you formulate some questions
Write them down and email your daughters haematologist.

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Thanks for the response and the support line number.

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Thanks for booklet and writing down questions is a great idea since I anxious when are at the doctors office and will forget to ask certain questions.

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