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

I'm new on here but I REALLY NEED to ask questions. My bloodwork just came back and my light chains are sitting at 44! I'm an RN for a health company so I can read bloodwork. My liver and kidney functions are perfect. All of my other bloodwork is also perfect. I have no pain and I've never had an infection in my life. Never get sick, never have I ever taken an antibiotic or had Covid. I feel perfectly fine. I only discovered this because I was a blood donor and they told me I couldn't donate anymore. I am very confused and scared because nothing adds up. Is ANYONE out there like me????? My cbc is also normal. My hematologist told me not to worry….ya, right!!!

I have LC MGUS ratio 2.1. Urine tests are always normal. Maybe the ratio needs to be very high to show in urine.

Greetings, it’s so frustrating to feel as though your medical needs aren’t being met. I had to look up Dysautonomia because that is something I know nothing about. And after reading about it I still only have a vague understanding of the range of symptoms but it would be awful to have those symptoms.
Lots of us who post here have struggled to find the right medical provider. It sounds as though you have not found yours yet. I agree with Lori wholeheartedly about a second opinion.
There are questions that a lot of us have about symptoms that one can attribute to MGUS, but most people don’t even know that they have it and it is discovered when they are looking for something else.
I’m not a physician, of course, but it may be a separate issue from your Dysautonomia, which does not mean that the MGUS is insignificant. It will need to be monitored by a hematologist/oncologist who is an expert in the treatment of Multiple Myeloma. We all hope MGUS never progresses to that, but we must be diligent.
Perhaps your PCP can refer you to the proper specialist for a second opinion if you are not receiving the care you need. I wholeheartedly endorse Lori’s recommendation that you seek out a provider who knows how to treat you. I receive my care at a CANCER treatment center in my community. If I had any misgivings about the efficacy of my treatment I would cast a broader net. Health insurance barriers can sometimes be worked around if there is medical necessity. It’s a disgrace that we have to make these health decisions based on health insurance parameters.
Let us know how this goes for you.
Patty

Hello @stefanielyn Do you have any option for a second opinion where you live? Is there a larger teaching hospital near you or a physician who specializes in integrative or functional medicine?

I have MGUS and Lymphocytosis. The Cancer Hematologist doctors recommend watchful waiting. I’m very symptomatic with Dysautonomia and shortness of breath. No doctor knows what to do to treat me. I’m very sensitive to meds. Mayo doesn’t take my insurance and no one can help me.

Hi @lipstickonmycollar I just wanted to followup with you. It’s been a couple of months since we last chatted. Any news with a second opinion?

Hi @michey, learning the language of a diagnosis can be daunting. I moved your questions about IgG and light chains to this existing discussion:
– MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/

I did this so you can read previous posts and connect easily with other member, like @pmm @gingerw @justnate @jart@ @packgb19 who asked similar questions and got answers about their blood results numbers as it applies to Lamba/Kappa light chains and ratios.

In the meantime, here's a good article that helps to explain light chains and their significance. – What Is Light Chain Myeloma? https://www.healthline.com/health/cancer/light-chain-myeloma

And 2 more articles about MGUS that you might find helpful
– Monoclonal gammopathy of undetermined significance (MGUS) https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
How Serious Is Monoclonal Gammopathy of Undetermined Significance (MGUS)? https://www.healthline.com/health/how-serious-is-mgus

Michey, Were there significant changes to your latest blood numbers?

I didn't want to know much about my MGUS results although I was getting tested every 4 to 6 months for the first 2 years. (I guess life with the pandemic was enough for me!
Anyway, now I would like to understand my results that show:
1. IgG with Lambda Light Chain with Faint Bands"
2. High free Kappa Light Chain
3. High free Kappa Light Chain ratio
(Fortunately, the M Spike that I had appeared once last year is no longer appearing).
If anyone can explain these further or offer links to other references, I would be most appreciative. Thank you!

Hi @teedee66, I moved your post about IgA lambda MGUS to this existing discussion:

– MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio: https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/

I did this so you can read previous posts and connect more easily with members like @jart @pmm @gingerw @justnate @loribmt @packgb19 and many others.

responding to @teedee66. It is my understanding that MGUS is a benign condition that means there is a higher than normal level of a protein M in your blood. At least this is what my doctor has explained to me, and that sometimes it can lead to more serious problems such as being more at risk for certain types of blood cancers. I recently had some IgG lab tests completed, all of which were flagged. Sadly, my doctor could not explain all of them and has referred me to a hematologist for further workup because I also have Lambda Kappa Light Chain disorders that also showed up in recent labs. Once I see the hematologist, I hope, like you, to have a more clear understanding, My doctor has suggested to me that there is a concern that I may have multiple myeloma, which was startling. However, I am not giving it much thought until I know for certain that I do in fact, have this condition that killed my father.
I hope you find what you are looking for.