Free light chain ratio in MGUS

Sorry, it should say so it’s narrower.

My IGM was the high one too. My Kappa FLC are now 379 which puts the ratio K:L at 44.6 when the "normal" maximum is said to be 1.65. I believe I may have peripheral neuropathy in left-hand fingers but my doctors say it is a flow challenge arising from my extensive use of bike handlebars when biking.
I believe the recommendation to just "live your life" is a good one. Look after your diet, your exercise and your medical care and always remember your doctors see many people per day. You get to see you every day. You do need both to be looking out for you, but your own self-care is likely to be the most important.

Hi, are you still MGUS? What is your M spike Or are you light chain MGUS? Thank you for replying.

Sorry can see you’re IGM like me, but kappa and I’m Lambda.

Your questions are 2 I have never asked the oncologist about so I don't really know the answers. Obviously it "spiked" to reach anything like 379 quickly but it has remained high for many years.
BTW: the oncologist also said this was likely to develop, if at all, into Waldenstroms Macroglobulinaemia.
Another fact you may find helpful with "living your life" is that the only actual diagnosis I have had was "Hypogammaglobulinaemia" What he was saying was I had zero immunities to potential respiratory issues. This year my wife got covid and I did not. We were together the whole time. Live your life Ellie.

Thank you for your kind words. Wish I could get on with my life, I was diagnosed in July last year and can honestly it has been one of the worst years of my life. It’s gone 1am in the morning here and here Iam yet again still googling. Don’t know why because it hasn’t got me anywhere after more than a year, more questions than answers. I have no control over it anyway, the drs would be the ones to decide if/ when I may need treatment. I wish you the best.

There are different criteria for when to begin treatment, but remember you are an important team member with your oncologist to decide what or when or if to initiate treatment
Best,
Judy

Yes, the trouble with the U.K. is I see a different doctor everytime I go to clinic. It’s nothing like the US. It makes consistency very hard as they all have slightly varied views.

@ellie1955

Many of our members have heard my anxiety story so y’all can tune out. 😊
When I was diagnosed with MGUS three years ago, I worked as a medical social worker and was used to digging through the research so I definitely did a deep dive into the information abyss. Dr Google is a glass-half-empty kind of Doc. From talking to Dr friends and my own reading, I’ve learned that there have been many advances in the treatment of Multiple Myeloma.
I also learned that the risk of progression from MGUS is very low. There are some “overachievers” but overall chances are that we will succumb to something else.
Anxiety is harmful to your overall health. Lack of sleep and consistent worry will make you feel ill. And eventually can make you ill. I literally made myself sick with worry.
We can’t control everything but we can control diet, exercise and anxiety. A healthful lifestyle goes a long way to feeling better. Anti anxiety medication, supportive therapy and having all your questions answered by doctors you trust will help. You may not need all of that but if you do, it will make you feel better.
We have so many members living with MGUS. The most important part is the LIVING part. Live your life. Enjoy your friends and family and do things that make you happy.
And I’m so glad you found this group. Our members are warm, knowledgeable, kind people who are open to talk to you about their journeys.
When do you see your docs again? Have you formulated a list of questions to ask?

Get as much information from reliable resources, organizations
Ask each provider what their treatment criteria they use
Knowledge is power
Remember your choice
Just because you can doesn’t mean you should!