Does anyone else have MGUS?

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

@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?

My mother is 63 years old.she got m protein value 0.43.she got results of free Kappa equals to 100 and Kappa lambd ratio to be 4.8 .And she got reported with IgG of Kappa type with gamma m spike ..Is this cancerous condition ?

Thank you yes it has taken about six weeks for me to wrap my head around this diagnosis so I am gradually getting back out there and doing my 2 mile walk and drinking my water and making wise choices with my food. I kinda let things slide. I didn’t have much of an appetite and I sure didn’t feel like going outside. Which is the best therapy in the world! You are an encourager and I do appreciate the good words you share

Hi!
I just found this post, I know it’s an older one but thought I’d hop in here anyway & hopefully someone will respond back.
I was diagnosed with MGUS about 30yrs ago. Nobody seemed to know much about it & I pretty much figured I’d be dead by now.
It was terrifying. I still had 2 kids at home & so I made my arrangements for after I passed. I was in my late 30’s. Most of the Drs were wrong about what was happening in my blood. And no one could tell me why I kept getting DVT’s. Finally after my last clot in my IVC in 2016 I saved some money & went to Mayo.
I finally found Drs who could tell me exactly what was going on. Absolutely incredible! I even had a BMB. I had refused one for many years because I didn’t trust anyone.
I’m at 5% myeloma cells & was told they don’t treat unless you’re at 6%.
And then of course COVID hit, I lost my mom, family moved, I moved….just life in general happened.
Recently tho my blood tests from my GP have shown a few changes.
I don’t know if it means anything or not but I feel like I’ve been very fortunate to have lived with MGUS for so long & will probably continue living with it without it turning into MM.
I’m also thinking about joining a clinical trial if it would help understand this disorder for others & possibly even take away the chance of it ever progressing.
Has anyone on here ever been part of a trial?
Thanks for listening & I wish all the best!

MGUS is considered asymptomatic. If you have excessive fatigue then it would be good for doctors to see if there is anything else going on. Checking kidney and thyroid function, and overall blood/urine tests can be useful. Getting hit with MGUS was depressing for me, and it did take some time to work through the grieving process. I didn't have fatigue so could still escape with nature walks/biking and other interests. It is good to have people you can talk with about what you are going through.

Thank you for this upbeat response I did get this diagnosis from a hematologist which was shocking to me. Otherwise I am the healthiest 75-year-old I’ve ever known. I don’t even have a prescription! How do you stay active and eat right but I must say this has allowed depression to creep in and I’m finding it hard to stay on my tasks I do have excessive fatigue is that just the depression?

I would like to follow your comments here because I have just been diagnosed also and I’m 75 and very anxious about this Health issue. PS I’ve actually visited Luxembourg many years ago. It’s lovely there.

It is hard getting a diagnosis of MGUS. It would be good to get more information from your doctor, and hopefully see an oncologist/hematologist for greater knowledge. MGUS is precancerous plasma cells in our bone marrow. Risk of it turning into cancer is about 1%/year, so for most people it never progresses to cancer. MGUS does not have symptoms unless it progresses to multiple myeloma or other active phase. I try to focus on things that I can change, such as diet, activities, and fun. Here is some background info on MGUS: https://my.clevelandclinic.org/health/diseases/17744-monoclonal-gammopathy-of-undetermined-significance-mgus

I only know a few months that a have MGUS. I‘m
very anxious. I have never heard about those things. I‘m 70 years old . I‘m very hopeless! Excuse my english, don‘t speak and write it often. I‘m from Luxembourg and i would like to now more about MGUS!
Thank you so much!