Does anyone else have MGUS?

@natelew
Sorry to hear about the neuropathy. I’ve been trying to get a neuro appointment for over a year now. Here we have a shortage of neurologists and getting an appointment is like getting a golden ticket to Willy Wonka’s candy factory.
I will finally see a neuro guy next week. We’ll see if he offers any symptom relief.
Is your neuropathy being treated?

I was diagnosed in 2023. Bone Marrow biopsy showed MYD88 gene mutation thus diagnosed with Waldenstrom’s Macroglobulinemia. Am still on “watch and wait.” Doctors believe covid shot caused it all.

Hello:
I have wondered if the covid vaccines triggered my mgus in 2021, after 2 moderna vaccines, followed by 2 boosters. I also developed proteinuria about the same time which resolved completely a few months after the last booster in 2022.
I have no evidence but am very curious about your doctor’s thinking on the possible connection.
Thanks and best to you.

Hi Patty, I’ve just been diagnosed with MGUS, have read & learned much about it, found this remarkably helpful online forum, and am scheduled to see my local hem/onc of choice Dec. 19. I wonder what goals I would be wise to have for that first appointment, given what others have learned from their experience.

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.

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

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.

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…

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.

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.😉