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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Aug 3 1:59pm | Replies (203)Comment receiving replies
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!
Replies to "Hi! I’ve been diagnosed with having hemosiderosis of the spleen, hemochromatosis and a paraprotein in my..."
@lclark918 I echo what @pmm said in her post. You deserve to have answers. If your doctor is too busy, does he have a nurse practitioner on staff whom you can confer with, and get solid information on your situation? It may be a matter of explaining that you don't understand exactly what is going on, and you need to feel comfortable with the diagnosis. And, please, your health and case is just as important as the next patient!
Ginger
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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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.