Does anyone else have MGUS?

I was diagnosed with MGUS over 14 years ago, DURING routine preop physical. Lab values are quite elevated but really do not have any bad symptoms. My Hemoglobin stays low at 7-8.2 range so take a nap most afternoons. My immunoglobulins are compromised but I am rarely sick. I will not take the CoVid vaccine because of more risk with MGUS but all in all I mostly forget I have it. Hope your course goes as smoothly.

Thank you

@tammy11 Welcome to Mayo Clinic Connect! Have you been diagnosed with MGUS? Any questions you have for me?
Ginger

Ginger, you seem grounded and very knowledgeable about MGUS. I live near Boston and Dana Farber and have been looking their PROMISE clinic and research. Their goal is to find the MM precursors so that people with MGUS don’t progress to more advanced illnesses. Some of their research (I think) points to more aggressive treatments rather than watchful waiting. Your thoughts? Many thanks!

@nolarn Thank you for the compliment. I'm all for research that will help point the way to slowing down/heading off advancing illnesses of any kind! So many times it takes stepping out of the box of what may be deemed conventional medicine and bravely looking at things in a new light, from a new viewpoint.

While research seems to point to the idea that there is no clearcut cause of MGUS, it is my belief [your mileage may vary!] that some people have a proclivity to certain maladies, or malady families as it were. For me, it is several different autoimmune conditions, as if my body is entertaining its own little civil war.

Would I have loved to be part of such a study for MGUS? You bet! As an active multiple myeloma patient, if I could assist in any way, I would be happy to. Did you notice that Dr. Irene Ghobiani trained at Mayo Clinic in Rochester, MN? Nothing ventured, nothing gained, in the field of blood cancer patients, and helping everyone to live their best lives possible!
Ginger

As an old oncology nurse (in age and experience) I think one of the most amazing changes I have witnessed is collaboration between institutions and doctors. We each need to recognize there in more than one way to skin this cat and keep at it. Sometimes that means challenging your doctor and being courageous enough to stop being a “doctor pleaser.” My own husband is reluctant to “complain” to his doctor when he should feel comfortable telling it like it is. It is great that Dr G trained at Mayo because they are more likely to collaborate with colleagues they know and respect.

Hi, I am new here. 55 years old and dx with MGUS this past summer after a year of feeling unwell, specifically bone/joint pain and fatigue. During that year, I was probably also terribly anemic and unfortunately this was not found until this past summer --- when an M spike was found by a rheumatologist whom my PCP sent me to for my fatigue and body pain --- who then sent me to see my old hematologist/oncologist (I had thryoid cancer in 2007) who found that my ferritin was 7. Why a PCP doesn't run ferritin labs is beyond me! A year of my life...going to my PCP often, saying "I don't feel right. I'm really tired. I wake up hurting and it takes my body 1 hour if not more to limber up." I had two ferritin infusions a week apart and my anemia and ferritin are now good. Time will tell how long it lasts. I also had a lot of labs...FISH, bone marrow biopsy; just to name a few. Anyway, I don't understand it all. I will be checked every 3 months. I have a "trisomy of 11 and 14" (whatever that means), kappa with IgG....sorry, I found this page and don't have my labs in front of me. But I have a lot of labs and I really don't understand them. My hematologist /oncologist told me I have MGUS and not to worry --- every 3 months we'll look at my labs. Any advice? Thanks, and all the best to all of you!

It gets easier as time passes to deal with the diagnosis, to understand the plusses in knowing. We live longer being actively monitored.
Any other cancers are caught earlier as well as myeloma if we ever progress to that point which is a huge positive. Early treatment helps!!

@lynne756 Welcome to Mayo Clinic Connect, Lynne! When we get a diagnosis that is confusing, it sure can set us back on our heels, can't it? MGUS is one of those conditions we might hear, but not really understand. Often, it comes along while being tested for something else, just like you experienced. I think that most of us here have had that happen to us.

As you read the posts, you'll see that we go through the wait-and-watch monitoring, usually bloodwork every three to six months. For me, I was going every three months back in 2017, and then my doctor decided to go every six months. Unfortunately, that first time was when things took a nose dive and she really regretted her decision to go six months. Many [dare I say most?] people go for many years never progressing beyond the MGUS stage, while others of us move into SMM [smoldering multiple myeloma].

I'm glad to hear your anemia and iron is now stable. Eating healthy, reducing your stress levels as much as possible, getting moderate exercise, and living life to your fullest is important! Being mindful of this condition, but not focusing on it, helped me. Being an overachiever, plus having additional health issues, I moved quickly from MGUS into SMM and then into active multiple myeloma, but my story is not the normal one.

Oh, the trisomy of 11 and 14 you were wondering about is having 3 copies of those chromosomes sometimes, instead of 2 in a cell.

We're here for you! Do you have any questions for me today?
Ginger

Hi, MGUS and Beyond, friends.
@lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and I don’t understand why it’s low, yet other iron-related scores, Hematicrit and Hemoglobin, are often elevated. Just made a list of the declining ferritin scores in their consecutive dates in my contact list, then made an edited screen shot of this to send to my hematologist.

He advises seeing me every six months but I make appointments with him every three months. My decision due to concerns about risk factors. I’ll see him Tuesday when I hope to get greater understanding of the whole gestalt of various out of range blood test results. Googling each just feels like being in a dark room with a sleeping elephant while only being able to touch its isolated parts. What are the implications of this IgM Kappa MGUS diagnosis with its odd other blood tests? Hope to learn more about it this time while being glad it has been fairly stable but slowly elevating since 2015.
Ginger, your commentary is always helpful. Grateful hugs!