Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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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!
Everyone has cellular mutations. The vast majority don't replicate, our bodies reject them. With MGUS, a deranged plasma cell took root in our bone marrow and replicates (hopefully very slowly). I've had MGUS for +8 years (no telling how long the mutated plasma cell has been illegally parked), am 70, and MGUS doesn't limit me. I still bike thousands of miles a year, volunteer, and have fun. Did something cause the deranged plasma cell? I'll never know. Here are some risk factors: https://pmc.ncbi.nlm.nih.gov/articles/PMC2947966/#:~:text=The%20median%20age%20of%20diagnosis,are%20younger%20than%2040%20years.
I had the same experience. I had asymptomatic covid and did not know it until I saw my routine blood work where the lambda and kappa escalated together. Then three months later the numbers decreased. All my numbers have gone up and decreased after my four major joint replacement surgeries. I was diagnosed. With IgG lambda in 2002 - 22 years ago.
Thank you so much for your response. It’s just so hard to accept. I am healthy in every other aspect of my life and have not taken a prescription, ever, so this is a huge blow and I feel like something had to cause it. Please say something other than my age I’m 75.😉
MGUS does cause reduced helpful antibody response - I was diagnosed 21 years ago after I couldn’t shake ear infection which got in my jaw bone! Had to be on antibiotics for 3 months. I had low grade fever and neurological symptoms memory loss dizzy visual hallucinations - from the infection. Once infection treated I was a lot better. So make sure you are checked for infection.
Doubt your diagnosis is from vaccine - MGUS tends to reduce immunological reaction- I had to get 3 vaccine for COVID to register any antibody response back in 2021 when they did such testing…
Diagnosed via incidental blood test finding at age 55, 15 years ago. Lost health insurance due to mgus so had to move to a state with high risk pool until Medicare at age 65. Recreational athlete my whole life and although mgus remains stable I suffered complete heart block (pacemaker implant) and years later a stroke. Idiopathic, the docs said, but I often wonder if mgus is to blame. My identical twin was diagnosed with NHL during this time. Her heart is fine.
I was tested for polyneuropathy (PN) 8 years ago because I fell a lot that year. PN is associated with a few things, like the celiac I have, and MGUS. I subsequently tested positive for MGUS. I probably had MGUS for a few years, but launching myself down stairs had the positive (?) effect of detecting it. I had a BM biopsy this summer and now have 15% plasma cells and the 1q21 gain mutation, but no symptoms and doctors says still MGUS. MGUS has no known cause(s), just possible; it likely varies from one person to the next.
https://www.melbournehaematology.com.au/fact-sheets/mgus-monoclonal-gammopathy-of-undetermined-significance.html
https://www.cancer.gov/news-events/cancer-currents-blog/2019/mgus-multiple-myeloma-progression-risk
I got sick after my last Covid vaccine, which was Pfizer. All the others had been Moderna and I developed symptoms and I have MGUS currently. I’m on wait six months for another blood and CAT scan and possible bone marrow biopsy. I am convinced the vaccine made me ill. I am so sorry that you are going through this.