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MGUS Diagnosis Criteria
Hello. I have not been diagnosed with MGUS, but I'm very confused about the criteria. I have been under the care of a hematologist for two years. I was referred to him in April of 2023 due to severe anemia and other anomalies in the blood. I'm going to condense everything, because it honestly is a lot of information. A lot of blood work was done to try to determine what was wrong. The anemia was determined to be due to heavy menstrual cycles, I received five iron infusions which brought me up, but I continued to struggle and eventually had a hysterectomy in September 2023. My hemoglobin recovered and has remained great. My iron and ferritin are descent. During this testing I was found to have a severe vitamin B12 deficiency as well. I have absorption issues due to Parietal Cell Antibodies, and receive b12 injections to bypass the stomach. I also was diagnosed with Sjogrens Disease, which I think is key to some of my questions. As you can imagine, I was very sick and they ran multiple blood tests. Part of this testing was a SPEP. The first test showed elevated kappa light chains, normal lambda and skewed ratio. He explained that this could be the beginning of MM but wanted to repeat the test in a month. When he repeated the test my range was half of what it was originally and he has continued to test every 3 months. My last test showed Kappa 38.2 (elevated) Lambda 17.8 (normal) 2.15 ratio (elevated), no monoclonals and all immunoglobulins are in range. I talked to my rheumatologist about this to see if there is a correlation of elevated levels with Sjogrens. She said oh you have MGUS. Mind you, my hem has never said this. So when I had my last appointment I asked if I have MGUS, he said no you have no "M". Is it possible to have elevated light chains and ratio and not have MGUS? I read there's light chain MGUS. I do trust my doctor but read conflicting things. Does anyone have insight on what is the criteria for diagnosis? Thank you.
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Hi!
You are correct, there is Light Chain MGUS that has no apparent monoclonal antibody or M protein. But my understanding is light chains can be elevated with autoimmune diseases, inflammation or infection.
Can you get evaluated by a MM specialist? It might put your mind at ease.
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2 ReactionsI have IgA kappa light chain MGUS for going on 9 years (I'm 70). My kappa is now about 300 and kappa/lambda ratio is 28; my M protein spike is barely detectable. It would be good to get a second opinion from an oncologist/hematologist to determine if you have or don't have MGUS. Sometimes doctors minimize the MGUS because it is considered asymptomatic with a low risk of morphing into SMM or MM. I don't know of any correlation between MGUS and autoimmune disorders (I have Celiac and collagenous colitis). https://ascopubs.org/doi/10.1200/EDBK_349643
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2 Reactions@justsherry
Welcome to our Blood Cancer and Disorder support group. I'm so glad you found us. The M protein in blood is the red flag for MGUS. I bet by now you've looked at the literature and have found that there is a lot of information and no clear "hey this is exactly like me." You need more information. That is best to come from a physician who specializes in the whole spectrum of blood disorders involving light chains, MGUS and even Multiple Myeloma. That might be the hematologist you currently see, but if it isn't then there is nothing wrong with getting a second opinion.
I agree with @kayabbott that this requires a very specialized skill set.
It's hard to be calm when you have so many questions. Even with a definitive diagnosis, knowing your condition is not a cancer, I think it takes some time to realize that if you do have MGUS, the rate of progression to cancer is very low. They monitor your health aggressively so it's unlikely that something else will sneak in there. And most people don't have symptoms.
I know that coexisting conditions complicate the picture and that another thing to add to your list of questions for your doctor. Ask all the questions. We all need doctors who listen and explain, answering all the questions.
I hope you will let me know how your discussion goes.
Patty
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3 Reactionsthis gives some good diagnostic information about MGUS.
https://ascopubs.org/doi/10.1200/EDBK_349643
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6 ReactionsI appreciate the responses. I see my hematologist every three months and my next appointment is coming up in less than two weeks and knowing the SPEP and Immunofixation is being tested again always causes a bit of anxiety for me. Although, I think I'd be equally as anxious if he didn't run it haha. I've tried to seek out a definite connection to my auto immune disease, and some things I read supports it could be auto immune and not necessarily cause for concern, other snot. I do worry and would like to know for certain but my hematologist and rheumatologist don't even agree it's MGUS. My levels have definitely improved since the first test and I've never had any monoclonal present. My first test in April 2023 the kappa were 128.1 (high) lambda 24.5 (normal) ratio 5.23 (high), this is when he brought up MM and said he was retesting me in a month and if it had gone up he would do a bone marrow biopsy. Within a month my levels dropped by half, all of us were very relieved. Again, I was very sick at this time, and severely anemic. I'm sure there was a lot of inflammation in my body at this time. In any event, I do seek out opinion and advice of others to see if there is anyone else similar to my circumstance.
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2 Reactions@justsherry
ugh. Dueling doctors. No fun. Hope this visit provides some clarity.