MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
The above was found in his blood serum test but follow-up 24 hr urine test showed only 2 free Kappas. Has anyone had experience with this? Does the urine test supersede the serum testing? Either way, is there anything to do other than “watchful waiting?”
BTW, he also has Dysautonomia (Diabetic T2).
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Ginger, I’m so sorry to see you have advanced so far with your condition. Thankfully you have an attitude that helps you to keep things in order to check your progress. I’m lucky to be with a major hospital that tests, teaches, includes patient input and a host of other novel ideas. One is to run a internet based medical records site called “My Chart.” It’s everything you want to know about your medical needs, everything! If this is any comfort to you, think of my poor body and the battles it’s fighting and losing. I keep saying I’m a freak of nature because so many genetic birth defects.
Did you ever hear the saying “You can’t see the forest for the trees?” Meaning if you’re in a forest, you can’t see anything because of all the trees around you. One birth defect almost killed me at 6 months old. That same birth defect is still with me causing misery for me every day. I was looking at years of test results, hundreds of them trying to see if my new pcp could figure out what caused the birth defect. I’m googling one question after another and then I asked the correct question and BINGO!!!
OMG I cried out, that’s it, that’s it, it’s got to be. Then I’m saying it can’t be, it can’t be true, omg it has to be. For almost 79 years I’ve been tormented with this monster and I finally know what genetic defect caused it. Then I see a statistic of how rare this defect is, it can’t be, it can’t be, Im nearly in tears I’m so happy to have finally found the culprit that has destroyed my life.
I do more research, check my Bloodwork for clues. Then I see them, its been staring me right in the face. Like the trees in that forest, all those test results were there, the answer was right there but I didn’t put all the pieces to the puzzle together until about an hour ago. It’s all right there in black & white, all the symptoms of this defect are right there. If I can convince my PCP it’s true, I’ll be one of rarest people on the planet, me and my whole family. According to the NORD website for Rare Diseases, only 15 families in the entire world are affected by this genetic defect. I know my mother had a number of the same health issues I have. That’s why I keep saying, It can’t be true but test from multiple different doctors for conditions not related all point to prove I am a freak of nature.
I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high. Waiting on a 24 urine as they found light chains in my urinalysis.
I've seen a hema/onco. 3 month follow up. I was diagnosed with pulmonary embolisms in August.
I feel like a sitting duck waiting.
Hi, @myboyzr2, Welcome to Mayo Clinic Connect! I’m glad you found this forum too. It really helps to meet others who are traveling along the same road. There are several discussion related to MGUS~Monoclonal gammopathy of undetermined significance.
(MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.
For most people it doesn’t pose a problem but it can progress into more serious diseases. We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
– Does anyone else have MGUS? https://connect.mayoclinic.org/discussion/mgus-diagnosis/
– MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/
– MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
I’d like to introduce you to @pmm, @momsys,@mommatracy5, and @dazlin who were diagnosed with MUGA. These would be great people to Connect with for support. ☺️
I know waiting for labs is so stressful. Wishing you some good news on yours! Are you currently on any treatment for your MGUS?
Ty Lori. Not currently. I've got to do a 24 hr urine and follow up with hema/onco in 3 month.
As I read other symptoms I realize they seem to be related. Hip pain, numbness tingling in my hands. I'm stressed. I've had big Heath issues currently dealing with pulmonary embolisms in both lungs.
I know the feeling. When I was first diagnosed with MGUS, I felt like I had the sword of Damocles hanging over my head. Every check up produced great anxiety. This lasted years. I now have acquired several other conditions that are eventually lethal. MGUS has dropped in importance.
It took a while to get a thorough workup for MGUS. I recommend the Mayo.
I am glad you survived the embolisms. I hope you are being treated. My husband experienced them and survived too.
The best words I can offer are not comforting. They are, however, what we all must confront: life is ultimately fatal. Something will kill me someday. So my best option is to live the best I can each day, and trust in God.
Hi @myboyzr2 I just wanted to make sure you have seen this reply from @anng53 which was meant for you. https://connect.mayoclinic.org/comment/789063/
How are you coping? Feeling a little less stress? I know it’s the holiday week, but have you heard back with results from your 24 hour urine test?
Free Kappas can cause kidney damage. Has anyone with MGUS been treated to reduce free kappa levels ?
Welcome to the MGUS club. It does seem a bit maddening to rely on the wait and see methodology, but that’s what we do.
I didn’t have the M protein in my urine. They do a pretty extensive bloodwork every three months and I know that, they monitor my kidney function closely. So far, everything has been OK.
I say this a lot because I find that the impact of anxiety really translates into physiological symptoms, but the more anxious I become the worse I feel. My white count shoots up in response to anxiety. It’s as though my body is fighting a physiological adversary. For this reason, I try to stay calm and centered about the diagnosis. While it’s true, that sometimes MGUS progresses to smoldering multiple myeloma or myeloma, that is rare statistically. I think it’s important to remember that. Live your life fully and not let anxiety be your theme song.
The other glass is half full thought I try to remember is that as a result of this diagnosis, I get excellent preventive medical care. They do such a thorough analysis, every three months with periodic scans, looking for lesions, that it is unlikely that some lethal disease will sneak up on me.
As a result of my MGUS workup, I know oh so much more about my 70 year old body and potential pitfalls than I ever would were I not so well attended.
Keep the faith.
Thanks for your comments. I was diagnosed with MGUS in 2014 ,then CLL and APL had their turn. After 8 months of daily arsenic infusions, I am in remission from APL but CLL still active. Now the MGUS is generating free Kappas and igMs damaging all organs irreversibly. I am hoping to find anyone who has been treated to reduce free kappas.
I am 68 years old and diagnosed with kappa light chain deposition disease. My kidney function declined and I lost 20 pounds within a few months. I have had both kidney and bone marrow biopsies. My treatment protocol will be similar to treatment for multiple myeloma. My first infusion is scheduled for mid February.