Does anyone else have MGUS?

@karishmagupta
Hello and welcome to Mayo clinics connect forum. I remember when I was diagnosed with MGUS. I hit the Internet and conferred with “Dr. Google“ and although I got lots of information, it was not somehow reassuring to me that I was going to be OK. MGUS is not cancer. It is what is known as a pre-cancerous condition although many who are diagnosed with MGUS never have progression to blood cancers. The most frequent blood cancer associated with MGUS is multiple myeloma.
There is a paraprotein in the blood with MGUS. I am going to provide some links to information that I hope is helpful to you as a follow up to this conversation.
Your mom will need a referral to a hematologist/oncologist. Choose wisely and by that I mean, try and get in with someone who has treated multiple myeloma many times in the past. Your mom does not have multiple myeloma, but you will want someone who really knows those ropes.
She also needs a physician that will answer all her questions. And you will have lots of questions. I’m sure. It’s always good to go with your mom or have someone else go with your mom to appointments so that you can help with all the information that she will receive at her first few appointments. You and your mom should make a list of all the questions you have and take that list with you when you go for her appointment. I check off all my questions and make little notes so that I can go back to them when later, I wonder what the heck my oncologist said about this or that.
I’m glad that you found this forum because I’ve learned so much from other members who have MGUS. Some have had it for over two decades. Some have symptoms like neuropathy in their feet and hands and others have found some success and stabilizing their numbers using supplements or changing their diet. These are all things best discussed with her oncologist/hematologist.
Unfortunately, MGUS cannot be cured, but symptoms can be managed and your mom will get excellent medical care because they will do bloodwork and scans of her bones on a regular basis. Some of us have no symptoms at all. I have some neuropathy in my feet and that’s my only symptom which may be attributed to MGUS… Maybe not. I also have type two diabetes which is well controlled by medication. The neuropathy may be attributed to that.
I’m sorry that you and your mom are having to worry about this, but I’m very glad that you found us and I hope that you will keep in touch and let us know how your mom is doing. I encourage her to join us as well. Even if you do not receive your care through the Mayo Clinic, they are very concerned about patient education and they provide lots of resources for those of us suffering with chronic illness. It’s really good as reference information.
Try to relax and take good care of yourself as stress and anxiety are not your friends nor your mothers. For people suffering from chronic illness, anxiety can really make them feel sick… Even if it is not related to the disease. Being a loving daughter is also very stressful if you are anxious and worried. Your mom can go on and live her life as she usually does, so enjoy her and encourage her to live her life fully.
Will you let me know how this works out for you? Do you have an appointment yet with a hematologist/oncologist?

https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

I find this helpful. Although remember, MGUS is not multiple myeloma, and is not cancer. But the normal ranges of lab results are helpful as I read my reports. I know if my numbers are stable or if something is inching up that my doctor should take a look at. I add any abnormal lab results to my notes when I see the physician for the first time and every time I see him subsequently.
https://www.myelomacentral.com/livingwithmm/multiple-myeloma-treatment-monitoring/understanding-multiple-myeloma-lab-test-results

@thencea, sometimes having so much data can make you feel like you're drowning in information overload. I hope you've seen the helpful replies from @pmm @lorkish and others.

What monitoring schedule has your hematologist suggested? How are you feeling about the follow-up?

MGUS is considered asymptomatic and is not a cancerous condition, which is why the "US" stands for unknown significance. That said, there is a 1%/year chance of it progressing to multiple myeloma or other cancer. I'm 70 and have had MGUS for 8 years; I have IgA Kappa light chain MGUS and my Kappa is ~300 and Kappa/Lambda is 29. It is good with MGUS, and life in general, to follow a healthy diet, get enough exercise and sleep, and manage stresses. MGUS doesn't limit me; I can still volunteer, exercise, and have fun. It is hard getting a diagnosis of MGUS, and good that you are doing background research.