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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!
Replies to "Hi, I am new here. 55 years old and dx with MGUS this past summer after..."
@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
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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!!