Does anyone else have MGUS?

Thank you. My hematologist was the one that diagnosed me with MGUS. No one seems to want to touch the idea of me having chronic Lyme - I’ve asked RA doctors, infectious disease, pcp, hematology, etc. what symptoms do you have with MGUS? My WBC count was so low for a couple of years that finally a new RA doc sent me to the hematologist. Said to re do bloodwork in a year. So for now I’m just trucking along with all the others issues that could all fall under Lyme.

@karishmagupta, going through the diagnostic process is hard, especially the waiting. It sounds like you have received the results of your mother's bone marrow biopsy before meeting her medical team to discuss the results and next steps. Fellow patients can't interpret these results for you on a forum like this one.

Biopsy results are only one piece of the puzzle in the diagnostic process. Your mother's medical team is the only one who can interpret the results along with her medical history, other studies and clinical exam.

I know you are worried. When does your mom have an appointment to review the results and next steps with her doctor?

When is your next appointment?

She will be getting her appointment till Friday 3rd January.I got this aspiration report from lab today only but the biopsy report will be coming on Friday ..i am not able get the meaning of these ones .So was a bit worried .I asked here with the hope that if someone gives me some clarity and I can have a bit peaceful sleep at night ..It's ok I can understand here the consultation is more important

@karishmagupta There are many of us here who understand the concern and stress you might be feeling, waiting to see the doctor on Friday 1/3/2025!

Because we are not medical professionals, we shouldn't nor can we interpret test results. Your medical team looks at several different results and puts them together to understand what your mother is experiencing.

I hope you will let us know what you find out on Friday. Meanwhile, please rest easy.
Ginger

And some like me have had elevated M spikes for 23 years with no progression to SMM or MM. I have never had a bone marrow biopsy although it was found by a premier MM center and followed by a MM specialist . This (indolent MGUS state) is true for five to 10 percent of elderly people - many, (perhaps most) never know they have the diagnosis.
MGUS can be a very indolent condition with no symptoms.
It is controversial as to whether asymptomatic SMM should be treated as a significant proportion of SMM patients do not progress to MM. This is a disease where early treatment of asymptomatic patients may not be appropriate - at least not until we have agreed upon biomarkers indicating which patients are high risk and very likely to progress to MM.

It would be good to have renal bloodwork that includes your GFR (glomerular filtration rate) and albumin and creatinine levels. MGUS can sometimes smack one's kidneys around. I've had IgA Kappa MGUS for 8 years, and this year chronic kidney disease showed up; my only other risk factors are being 70 and having celiac disease. Bubbly and protein bits in urine suggests one's kidneys are not filtering proteins as efficiently as they should. Urinary tract infections commonly have different symptoms (itchy, smelly,...).

Thanks, Kay. I do get those tests with the annual screening. I was planning to wait until the next round (July) but thought I would ask in the meantime to see if I should test sooner. It's pretty minor so guess I'll stick with the plan.

Happy New Year!

You might consider asking your doctor about blood/urine tests. IF you test positive for kidney problems there are natural and medical ways to prevent or limit further damage. Here is a rather boring paper (or I'm reading too many rom coms) https://pmc.ncbi.nlm.nih.gov/articles/PMC6832055/ . Here is one on sediment: https://www.medicalnewstoday.com/articles/321338 . It is good to avoid kidney stones (drinking citrus water helps), my husband had those (painful, including blasting them).

Not all kidney concerns can be directly linked to MGUS. I had diagnosed chronic kidney disease before my MGUS. When we tested for the Bence Jones protein, it was not present. This is a very solid indicator that would show kidney involvement due to the MGUS. For me, my kidney disease is the result of a very rare autoimmune condition. Keeping our kidneys healthy, no matter what else is going on, is very important!
Ginger

Hey! I was diagnosed with Lymes in 2006 if I remember right. I actually went to a dr for my elbow that I had messed up while removing a ton of old wallpaper. He wasn’t a naturopath or holistic dr, but a friend told me he had a treatment that worked without any drugs. When going over my history he asked if I had Lymes or had ever been tested. Told him no. He wanted to test me and again I told him no. I really didn’t want to deal with anything else. A year later at the urging of my family I got tested. It was positive. He told me we could try antibiotics but that mine was chronic & they probably wouldn’t help. I always wondered if that was the second protein showing high in my blood. I found out later that he was an LLD. Lyme Literate Dr. I’m sorry you can’t get one of your drs to help you out. I have only been able to get one dr to even acknowledge it. Her brothers best friend almost died from it so she had a front row seat to how devastating it can be. Others flat out say they don’t believe in it or like one said…“when I hear hoofbeats I look for horses.” Seriously. My Lyme dr was very good but very expensive. Insurance won’t touch it. I really tried to condense this down so if you have anymore questions that maybe I can help with please let me know.
Wishing you all the best!