Does anyone else have MGUS?

Same as you
Go yearly now to hematologist-oncologist for labs.
My results are status quo, so I only need labs once a year.
If results change, I will need more frequent labs.

@lisamichelleely Well, at 70 we usually are not as energetic as we were at 50! Generally, good diet and mindful living can go a long way to helping us. Yes, MGUS can be an odd condition, but as you have read here, many of us live a long time with no progression of this condition. I hope you can wrap your head around the fact that as you have this diagnosis, it doesn't need to be a source of lack of energy. Our minds sometimes play tricks on us, leading us to think the worst of things. It doesn't need to be that way.

What bleeding source are you speaking of? Is this the condition they were testing for when they discovered the MGUS? If so, have they narrowed that down for you?
Ginger

I think it's important to run any decision to use OTC medications or supplements by your PCP AND hem/onc physicians. I am fortunate that there is also a PharmD attached to my PCP's clinic who went through all of my current medications and ruled out any potential complications posed by the addition of curcumin to my regimen. I am not otherwise immunocompromised so I have taken 2000 MG of curcumin daily for nearly a year and a half now with good results and no apparent side effects.

Thank you, Ginger. This is such an odd condition. It has just sucked all the energy out of me. I want to travel again, and go on long adventures, so I’m determined to get my bleeding source figured out.

I have MGUS, it was found accidentally when I was going through a bunch of bloodwork for something else.
I see an oncologist once a year to do bloodwork to make sure
nothing has drastically changed. I have been doing this since 2013 and my numbers have moved around a bit but nothing to be concerned about. In the beginning I got all stressed about having the bloodwork and going to the oncologist, now my numbers have been virtually nothing for so long l don’t stress over it much anymore.

@franciscomacias Welcome to Mayo Clinic Connect.

Many of us have no overt symptoms. How I dealt with MGUS was to make sure I kept to a healthy and appropriate diet for me, get good moderate exercise, and keep stress levels down. MGUS was not my only health concern, and a lot of others here are the same.

Many of us go through anxiety issues, trying to figure what to do. Please read our discussions here and get some tips for coping. Have you felt you have experienced any symptoms?
Ginger

@lisamichelleely Welcome to Mayo Clinic Connect. And, thank you for sharing your story and experience! It's important to show the rest of us members, that everyone is unique and our journey can be similar to someone else, yet have differences.

I've said it before, in different conversations, that our bodies are such complex machines!
Ginger

I was diagnosed with IgA MGUS WHEN I WAS 52. I’m now 61. The typical age for this diagnosis is 70+. So yes, another over-achiever! I had back pain which was diagnosed as pars fractures, also known as spondylolysis. It is a stress fracture on the lumbar spine. That led to bloodwork which resulted in the MGUS diagnosis.

Yes, we “MGUSers” are on the radar, but other symptoms and conditions can happen before we (hopefully never) get to the SMM or MM diagnosis. I see an oncologist/hematologist. It’s NOT enough to just have a primary care doctor. You need to be monitored by a blood specialist. I started out with a bone marrow biopsy to get a baseline reading; had that in August 2016. After that, I was seeing my oncologist twice annually. Well, things started going sideways in 2022. I was feeling incredibly fatigued; heavy breathing, limbs felt like 100 pound weights were attached, excessive sleeping (I felt drugged up) and couldn’t walk more than a few feet without feeling like my heart was pumping out of my chest. Oh, and the strangest of all things, craving dirt! Yes, DIRT! After feeling that way for a couple of days, went to ER and was hospitalized, I needed two blood transfusions. Long story short, I now have both acute and chronic iron deficient anemia, which requires blood transfusions and iron infusions every few months. That explains the pica cravings. My body was telling me what I needed - iron. I’ve also developed Dyshidrotic eczema. My hands blistered over and over for months and the itching could NOT be relieved. I even slept with ice bags on my hands because it was absolutely DEEP, unbearable itching. They would peel so deep that I had bleeding and painful fissures. I finally saw a dermatologist and was prescribed topical steroids & Opzelura (Opzelura is an absolute godsend.) If you read some of the MGUS conditions, this is all listed. The iron deficiency has also caused my fingernails to raise and fall off at different intervals. Still searching for the cause of the blood loss (more tests Monday!) I’m only mentioning these items because you don’t want to ignore treatment for any of them. Just stay vigilant if anything seems off so you aren’t in the emergency room! Hope this helps a bit.

@franciscomacias
Hello! there are several discussion threads on diet and MGUS. Here is one.
https://connect.mayoclinic.org/discussion/plant-based-eating-to-lower-the-chance-of-mgus-progressing-to-myeloma/
I personally have not changed my diet. Some have tried various diets with some success and there are some studies. I have tried curcumin as a supplement to my diet and my numbers have stabilized and are at the same level that they were 3 1/2 years ago. Whether or not that is because of the curcumin I can't say. I retired during that time and my stress levels are definitely lower!
What have you tried that you may feel has been successful?

@dducote
ouch! Have they done any bone scans for you recently? You might call your hem/onc doc and see if you can get some scheduled.
I'm sorry you're having this pain. How long ago did it start?