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

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.

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?

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

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

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!!!

Good Morning
The diagnosis is very frightening. Like you I was/am
A caregiver ( teacher and caregiver for elderly parents). It is shocking to have to focus on my own health. You will find this group helpful, supportive and at times alarming. But unlike the rest of the world, they understand the the uncertainty we are all living with. Do things you love. P

Same situation here. ICU RN, Incidental finding on my labs last year, 24 hour urine done, bone marrow bx done, diagnosed with MGUS. Labs being followed every 6 months. Was going to once a year but serum and ratio increased last month so repeat in 3 months. Rest of labs look fine and feel okay. Hard to avoid going “down rabbit hole” as they say. Trying to keep busy. Understand what you are going through. Yoga., diet, mediation, walking, and meds if warranted.
Thinking of you.

Thanks So MUCH for responding! The "rabbit hole" is all I have it seems. I'm trying to not panic but it's not so easy to just sit around waiting. I guess we have no other choice. I would love to keep in touch. Thank you again. At least I know I'm not alone.

Yes! As nurses our minds don’t focus on the present but the “what ifs”.
Another thought is reaching out to a social worker. I go to Dana Farber and if need be I will reach out to their social workers.
Acupuncture I have done as well.
Positive thoughts!

@robinrossrn and @kakc19
I’m so glad that you suggested seeking the support of the medical social workers attached to your treatment facility. I was a medical social worker for the last 15 years of my career and I like to think that we were good support for families. The social workers who worked the cancer units were also very aware of resources

I was diagnosed with MGUS almost 2 years ago. It is a little overwhelming and it’s a complicated diagnosis so if you’re like me, you go right to all the online “doctors” and start looking at doom and gloom.
I strongly advise against Dr. googling. There is a lot of information out there and some of it is just wrong or worst case scenario. Anecdotal information is also of very little benefit because as you are learning, the juggling of these numbers in your lab results is also complicated. I think the very best thing you can do is find an oncologist/hematologist who you can trust. Then rely on that physician to give you good information and counsel. Keep looking until you find someone. Don’t settle for someone you don’t feel comfortable with or for someone who is not willing to communicate with you.

Anxiety is not your friend so if you find yourself overly anxious remember that MGUS rarely progresses to multiple myeloma. And if it does progress, there is good treatment and lots of new research yielding excellent treatment results.

I’m so glad you found this group and welcome.

Patty