Diagnosed: MGUS

I was diagnosed with MGUS in 2021. My symptoms were severe right rib pains on my back, intermittent fevers, headaches and sometimes dizziness. My former PCM would not listen to my complainta for over a year. He was saying that I was fat and should lose weight. My BMI at the time was 27.3. I am a Family Nurse Practitioner. I had the fear that something was wrong with me, especially with my bones as I was earlier diagnosed of pre-Osteoporosis. My grandmother on my maternal side had Osteoporosis histories, with 3 in the family that were deformed, including my granmother who had spontaneous hip fracture.
On my father's side, he died of Multiple Myeloma at age 71. I was afraid. I related all these histories to my PCM, but he never paid attention. I then request from my insurance for a change of PCM in the group.
I was re-assigned a Family Nurse Practitioner, and the staff informed me she was a very nice and thorough provider. The first day she saw me, she asked me to please tell her my whole health history. She listened attentively! She then revealed to me some abnormal lab results in my record for the past 2 years, and asked if those were discussed. I told her that I have never been told anything about abnormal lab results, and have no access to their portal.
We talked and agreed on repeating the blood work immediately. She also had me create access to the portal. The results of the lab result she ordered were worse than the previous ones. She immediately referred me to HEM/ONC STAT!
At HEM/ONC first visit, the physician was very kind, patient and understanding. He ordered bone scan, lab draws and urine test, all done within one week. The Bone scan result now reveals total osteoporosis. The lab and urine results were terrible. He went ahead and performed bone marrow draw. He then confirmed that I have MGUS.
Since then, I visit twice a year (seeing him once) and his other staff once. I have been doing labs every six months. Fortunately, the numbers had gone down remarkably. There are just minor negative numbers now. My last test was this past month, and the results were better that the previous one.
However, I am anxious at times, and I pray that a cure will be found soon to prevent transition of MGUS to Multiple Myeloma.
We are gathered here praying for one another on an issue we have no power of control over it. We will continue to talk to one another, encourage each other, and believe that redemption from this disease will happen at our time.

I have had MGUS also- 4 years now with minor fluctuations with low numbers and see my oncologist yearly now.
Can you think of anything you did to improve your lab results? Congratulations on the improvement, btw!

I was diagnosed with MGUS at 47. I am now 72. My numbers remain fairly consistent with some fluctuation. Just saw my oncologist. He said I'm doing great. I don't take supplements but have tried to reduce the pesticides in my food (since some research sees a correlation between pesticide exposure and MGUS). So I filter my water and buy only organic fruits and veggies. I go to a market that also has organic meats, milk and coffee. I eat no red meat. Helpful to check which foods have the most pesticides (i.e. apples). As you can see I've had it for a very long time. Of course, I have no idea if it helps but I like supporting local farmers and trying to keep my pesticide intake to a minimum. Nice have this space to share!

@kathygrentzenberg70
I’m so glad you found our Blood Cancers & Disorders Support Group. Welcome!
It’s so encouraging to hear that one can go so long without MGUS progression. You’ve given me a lot to think about as it makes perfect sense to avoid pesticides.
I’ve not been diagnosed but about four years, but I find as time progresses, my aging body gives me other things to worry about and I almost forget about the MGUS. I am just grateful it is sleeping while I go about living my life.
Thanks so much for your post. I hope you will jump in the discussions again.
Patty

I reduced both my protein and carbohydrate consumption levels each day. Our body is not doing well with protein absorption. Avoiding vitamin B12.

Hello, I was diagnosed one year ago. I recently had my blood draw, it is only drawn once a year. My numbers had went up a little, but the doctor did not think it was cause for concern. I’m concerned. I have hip pain that has lasted for over a year. My doctor says I need a new hip. My kidney function is down to 33, and according to my lab work I have anemia. I have type 2 diabetes, and high blood pressure. I have not had an issue with either in over two years or longer. I just don’t think yearly testing is enough. I now have a nephrologist, I can’t wait to see what he thinks about all of this. Is my numbers up because of my low kidney function, or is my kidney function low because of my numbers? I can’t shake this feeling, that I have a reason for concern.

Why are you avoiding B12. I haven't seen any connection between that and MGUS. What am I mising

@kathygrentzenberg70
I’m so glad you found our Blood Cancers & Disorders Support Group. Welcome!
It’s so encouraging to hear that one can go so long without MGUS progression. You’ve given me a lot to think about as it makes perfect sense to avoid pesticides.
I’ve not been diagnosed but about four years, but I find as time progresses, my aging body gives me other things to worry about and I almost forget about the MGUS. I am just grateful it is sleeping while I go about living my life.
Thanks so much for your post. I hope you will jump in the discussions again.
Patty