MGUS Symptoms: What symptoms did you experience?

@omemee
You might ask about at what level your doc will be concerned. Also, what is in the plan to monitor renal health.
Just remember to breathe and try to relax. Let me know about Weds! Fingers crossed.

Thank you so much for your kind support!!! Will let you know.

Patty,
My Hema/Ocologist is in a Cancer Center, so I will see someone he knows has MGUS experience; if not I live w/ 2 hrs of Johns Hopkins and will get a referral to there. I just met w/ my GP and when I told him of MGUS he made the statement "Well that's not a problem as it has no symptoms." I quickly corrected him on what the Mayo Clinic lists, as well as Johns Hopkins and he quickly took a back seat & said we will just stay w/ the normal stuff and let the Hema/Oncologist handle the rest.
I have had a Nutritionist friend advise of getting a complete hormone analysis to see what may have happened during the Prostate Cancer stage. No one really knows how long I had the cancer as I had NO symptoms. So the analysis is definitely on the plan to get it checked.
Thanks for all your help and suggestions. I am definitely trying to catch up on items that could possibly be linked to what has been going on. I will meet w/ the leaving Hema/Oncologist in 2 wks and have a list of questions to get answers before he passes me off.
Thanks again.

@sportedgee
You have a strong start right out of the gate. Excellent education for your PCP. I am glad you have found such good resources.
I hope you will share your experience with the hem/onc doc.

I have MGUS and experiencing symptoms of fatigue. Also, tired after being up 2 hours. This came on gradually, since being asymptomatic for almost 20 years, unfortunately an early diagnosis. First symptoms, unbalanced visual feeling in my head. My Kappa number jumped 20 points in 4 months, now sitting at 67. My other blood panels are normal range. My question, what should I expect from my oncologist at my upcoming visit? I have requested my own tests with MRI/occular focus, bone scan, early blood work review. Does one just live with almost debilitating fatigue?

@rlhare
Welcome to Connect. Fatigue is frequently mentioned as a symptom of MGUS. I’m sorry you are experiencing this. 20 years is a long time to have had the MGUS diagnosis.
How often have you seen your Hem/Onc doctor for follow up and do you typically get blood analysis, scans, urinalysis and/or other testing routinely so that you have a recent baseline for comparison purposes?

@rlhare I echo the welcome to Mayo Clinic Connect. This is a great place to ask such questions and address your concerns! As @pmm Patty asked, what has your oncologist had to say about all this? Remember to advocate for yourself, and get those tests done. Discuss with your specialist their thoughts on how best to proceed now. MGUS can change quickly, or it can lie dormant for a long time, as it seems your case has done. Our bodies are marvelous machines, and we learn to accommodate slight changes without realizing it.

As for living with fatigue, most of us will have different answers to this. I do what I can, and have had a hard time learning to forgive myself when not able to accomplish what I thought could be done. Be gentle on yourself. Do you have family and/or friends nearby to help you?
Ginger

I do get routine blood work done. I have had the Nurse Practitioner for last 3 visits. I also requested the bone scan, since my teeth indicated some resorption, which the dentist said followed a pattern of MM. There are a couple suspect spots on calvarium from bone scan, but not on MRI. Does an mri only scan soft tissue?

@rlhare
An MRI Picks up almost everything in the body. Bone, muscles…organs.
The only medical professional that I listen to regarding MGUS or multiple myeloma is my hematologist/oncologist. I certainly wish that professionals for whom this is not their expertise would temper their inclination to give diagnostic counsel.
We all fear that any time we feel bad, this is a possible symptom of multiple myeloma. That anxiety is the common denominator, but anxiety can also make us feel sick or sicker.
I had a couple of spots on my spine that they thought perhaps were lesions, but they turned out to be arthritis. That differentiation was made as the result of a CT scan.
It’s good that you’re advocating for yourself to get the testing that you need to reassure you or to figure out what’s going on so it can be treated.
I always try to keep in mind that the progress that has been made in treating multiple myeloma in the past decade has been phenomenal. So worst case scenario they’ll just have to fix me!
How long do you have to wait to see your Hem/Onc doc?

Once a year, but called for appt after 4 months, since experiencing unusual symptoms
Will go end of June again and actually see the oncologist. I agree anxiety maybe part of my concern