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Hi there, I was diagnosed with MGUS in 2017 because i went to the Dr knowing there was something wrong with me so, blood test after blood test for over 18 months and 3 HIV tests later they decided to send me to the Hematologist for high inflammation markers and white blood cell and low red blood cell count. The Hematologist said my IGA Kappa light chains were high and my Kappa/Lambda ratio were abnormal, still no name for all this strangeness, so i got to researching and next appointment i told him i had IGA Kappa light chain MGUS and he looked quite surprised and i said i google a lot. Well he agreed with me and said the reason i didn't tell you was i didn't want to worry you, whatever! Anyways since my first blood test my Kappa light chains have gone up from 39.40 to 91 and my ratio has gone up too last results they jumped up by 30%, but they still don't seem worried so i try not too but every time my next bloods are due i start worrying, my bloods are next month, i'm not sure what to think if they jump up again and at what number should i start worrying does anyone know? Thanks in advance Michelle.
Replies to "Hi there, I was diagnosed with MGUS in 2017 because i went to the Dr knowing..."
I am 68 years old. I was referred to a nephrologist because of weight loss and declining kidney function, eGFR 30. I was diagnosed with Light Chain Deposition Disease following both kidney biopsy and bone marrow biopsy. My serum Free Kappa Light Chains was 160.67 mg/L with a 8.35 Kappa-Lambda Ratio. I hope this information may be helpful to you.
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Michelle, I asked my hematologist/oncologist how high my numbers and Ratio would have to be for me to start getting treatment and he assured me that I wasn’t even close to that yet. I opted not to get a bone marrow biopsy because I feel like getting my bloodwork done every three months we’re going to be on top of that. If my numbers start to get crazy, sure. I’ll do it.
I feel good which probably helps.
Strange that you wouldn’t get an MGUS diagnosis from your doctor and you had to do your own research. I probably sound like a broken record, but I think it’s really important to have a hematologist/oncologist that you trust. You should ask those questions about the plan in the event your numbers get “wonky” and how high would that be? What would his/her strategy be? If it’s going to be a while before your next appointment, then you can call so you can speak to your physician directly and ask your questions. I always have a long list.
Patty