Does anyone else have MGUS?

Ugh I hate dealing with insurance and managed care. I’m glad you are diligent and doing good research. Fingers crossed for a good report next appointment. Let me know how it goes.

I have MGUS. I was diagnosed several years ago and having blood work done every six months. About a year ago, I began having pain and heaviness in my legs. There were times I felt that I would fall. Blood work and tests by a Neurologist, showed I had neuropathy caused by MGUS. I went through infusions of Rituximab (?) which helped. I would be interested in learning how it has affected you.

@mikxtr How frustrating! Not sure which specialists these people are, but if not a hematologist oncologist, please try to connect with one. As you have read, MGUS can be a no-to-slowly growing issue, and many people go many years without any advancement of disease status. But, it needs to be monitored.

In my case, I connected with a well known hematologist oncologist in the town where I lived. She had me testing every 3 months. Then decided to extend it to 6 months. And, during that time, I advanced to smoldering multiple myeloma. I would like to think she was very upset it fell through the cracks. Truth was, I was just on the cusp of moving 800 miles away, so she handed me off to my new oncologist. He is Mayo Clinic trained. He was concerned about the details of my case, and being the overachiever I am, within a year my situation advanced into active multiple myeloma. Very unusual, so please don't let this scare you.

Play the game you need to do, and keep pushing for your healthcare!
Ginger

@jmvb23
Welcome to Mayo Connect. As you have time to read through comments, you’ll notice an amazing range of symptoms attributable to MGUS. We are each different but neuropathy seems to be common among us.
A lot depends on if there are concurrent conditions. I have type 2 diabetes which is well controlled by diet and medication. So is it the MGUS or the Diabetes that causes my neuropathy? Hard to tell.
Here is some information.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367
Do you have anything else besides the neuropathy?

I was diagnosed with MGUS in 2022 and CMT. Have had fibromyalghia for years and osteoarthritis, along with IBS, diverticulitis, etc. I have recently been diagnosed with biclonal gammopathy. I see my neurologist in July for discussion and exam. It is my understanding that biclonal gammopathy is rare. Have researched everything I can, but not much information. Please let me know if anyone has been diagnosed with this. Any input is appreciated.

@nan77 Welcome to Mayo Clinic Connect. I agree, biclonal gammopathy is indeed a rare animal. If you put just that into your search engine, you will find several scholarly and long articles about it.

What is your hematologist oncologist telling you about a treatment plan?
Ginger

My neurologist said we would discuss going to hematologist oncologist when I see him in July. I will keep searching for information. Thank you for your suggestion.

@nan77
Yes, welcome. I don’t know about your insurance coverage, but when I was diagnosed with MGUS, I did not need a physician referral to see a hematologist/oncologist. I researched by calling around and talking to doctors, patients online and especially nurses who work in the field (they are very opinionated 😂) I was unable to get an appointment with my first choice, but I am very satisfied with the specialist who is treating me.
When I was first diagnosed I read a lot on the internet but I find that that glass is half empty from the vantage of being three years post diagnosis. I needed to sit in the room with a seasoned hematologist/oncologist who treats MGUS, Smoldering and Multiple Myeloma. I have great specialists for other things, and my PCP is first rate, but blood disorders are very complex. I wanted the best I could find. Even now, if my MGUS progresses, I will go to Mayo for a second opinion.
Sometimes you have to decide for yourself what is in your best interest and make it happen.
I did a quick search of the posts to see if I could find someone posting on biclonal gammopathy and came up empty. It looks as though it runs a similar course to MGUS , but you really need to talk to a medical provider. You might feel reassured. Anxiety is a bear to deal with.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5780647/
Please let me know how this goes for you. Do you live near to a teaching hospital or cancer center that treats MGUS, Smoldering and Multiple Myeloma?

Thank you so much for sharing your experience, the information you found and appreciate your advice. I am presently a patient with Mayo Clinic and had initially gone to the neurologist that specializes in Charcot-Marie-Tooth Disease. He did extensive blood work and this is when the biclonal gammopathy was found. I will definitely push for the hematology oncologist referral. I am so glad that you have been blessed with a doctor who cares. Will post what occurs with my visit in July. Thank you again.

@nan77
Oh good! You are in excellent hands at the Mayo Clinic. I’m glad you will advocate for your care. Wishing you the best possible outcome and I am looking forward to hearing more about your journey.