MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Hi! I’ve been diagnosed with having hemosiderosis of the spleen, hemochromatosis and a paraprotein in my blood. I recently had blood work done which showed, my light chain Kappa high and my quantitative free light chain kappa/lambda ratio was high, but the IFE showed no bands of restricted mobility (paraprotein). Indication: Monoclonal Gammopathy. I have kidney issues as Gfr goes down to 27 at it’s lowest and goes back up, never making it to 60, closest is 54. I have back pain, rib pain along with hip pain. I also have extreme exhaustion, which I start out tired and than it just hits me that I feel so exhausted that I can’t hardly walk, breathing isn’t good but I have a lot of edema with I take 100 milligrams of torsemide which helps. My oncologist/ hematologist says there’s nothing to worry about, but we never go over test results as he says he reviewed them and they are good and he’ll see me in six months. I wanna believe that, so I’m assuming if the ratio is high but IFE shows no bands of restricted mobility that it means normal. It’s just so confusing when you go to your doctor and he has allotted 10 mins for our visit so he’s in and out, but he’s the expert and I’m sure his other patients may have more important health issues. Can anyone who’s experienced my symptoms offer any encouraging words that will put my mind at ease. I trust my doctor or I did in the beginning of my journey but still sometimes we just need a encouraging boost! Thanks for letting me rant. Sometimes you just have to let it out!

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I have jut begun with a Hematologist, and being this was an accidnet we found the MCUS, I did not think anything about the fact I was told not to worry about this problem and come back in 6 months, but the second time I thought why am I back again if it is nothing? When I was leaving I asked the nurse at the desk, 'WHAT DO I HAVE"? She proceeded to give me a complete explanation. Quite different than the Doctor's explanation. At 92 I am not likely to get over excited about this, but believe me my next discussion with my doctor will be quite different. Never accept that politte pat on the head, and smile "Trust Me". This is YOUR BODY. Understand what is being done and why? If you cannot get these answers from your present doctor, TIME TO CHANGE.
Gina5009

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My PCP initially found my MGUS late fall of 2022 and referred me to a hematologist. The first appointment was in January and the second in April with blood work for both appointments. The hematologist never went over any of the bloodwork results with me and when asked he said no worries you are very low level MGUS. The need to know and understand cannot be brushed off, it just causes more anxiety. So I got on Dr Google (there are some very good resources) and did a lot of careful research and in doing so found that the Mayo Clinic has developed a progression assessment based on their research into MM and precursor conditions. Anyway, turns out I’m at a high-intermediate risk of progression. Since following this group and the recommendations to others of finding a MM specialist, I called the Mayo Clinic in Jacksonville and they informed me they are not taking anyone with a MGUS diagnosis at this time. I discussed all of this with my PCP and I now have an appointment with a specialist at MD Anderson later this month. I’m hoping I get a much needed explanation and understanding of what’s going on and how this will affect me going forward. I am IgA Kappa with a very low M spike but a kappa / lambda free light chain ratio of 5.18.

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I was a medical social worker for the last 15 years of my career, and I find it offensive that your oncologist hematologist only allows you 10 minutes. You need to find a similarly trained physician who will spend the time with you to assure you about what is going on with your blood work. That’s not right. You’re very generous to think of the other patients but you need to be thinking about you and what you need.
Is there a support group in your home community or can you find someone on this board who is from your home community? Surely someone knows a physician that has some humanistic skills in your area.
I don’t want a physician who will gaslight me, or make light of my diagnosis and risk associated in treatment but I want a physician who will spend enough time with me to answer all my questions, and who I can trust to give me a straight answer while at the same time being kind.
You might want to consider getting a second opinion from a recognized treatment facility that specializes in multiple myeloma.
The nice thing about this board is that there is a wealth of experience in dealing with treatment for MGUS… Watching and waiting… Smoldering multiple myeloma and unfortunately also multiple myeloma. It’s good to know that I have support and people I can go to if I have questions but I am absolutely insistent that I have a doctor that spends the time with me needed to educate and me.

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Thank you Ginger, I’ve actually tried speaking with the nurse but she’s just as hurried as the doctor. I think I’m going to try to get a second opinion and maybe it’s like he says that if there was anything that was critical to my health he would make me aware but it seems like I’m feeling worse and no answers to my questions it’s totally frustrating. Sometimes I feel like saying can I just stay home and you file it on my insurance. It’s really sad as I have trusted this doctor for sometime with my health, he was attentive the first few appointments but now I feel dismissed and unheard. I’ve done some research today and do believe I’ve found another doctor that may be able to help me understand my test results. Reaching out tomorrow to see if he is taking new patients. I appreciate you responding, wish me luck maybe there will be answers for me in the near future.

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I’m so sorry- you don’t need this additional frustration!
Hematology is very detailed & nuanced it seems- every time I go over my lab results I take away something new I hadn’t noticed.
I was diagnosed with MGUS in 2021 during a routine physical. I get lab work yearly now.
I think there’s a balance between giving us so much information we overwhelmed & anxious or just answer specific questions we ask and reassure us.
But things can be missed- no one cares as much as we do about our own health.
We do have to be our own advocates!

My initial BMB report was wrong- I was given a grim prognosis- I immediately got an appointment with UT Southwestern (Dallas) with a myeloma specialist- they looked at my slides and said the plasma level was 1-2% ( not 10%). I also had the slides sent to MD Anderson, and Honor Health in AZ to a specialist there. They all agreed MGUS.
So I had to search out online and work aggressively to get to the right people.
I wish you the best as you get clarity, and for peace & good health.

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I have tried to make my voice heard but to no avail I’m cut off mid sentence and he’s out the door. This next appointment is going to be different I am going be heard and if not I will ask to be referred to another specialist or I’ll reach out to my primary for a referral. Everyone’s encouragement has been amazing and very appreciated. It is helping me to find my voice and making me realize I count too! My appointment is tomorrow I will updated asap. Thank you so much.

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