Does anyone else have MGUS?

Ginger, I’m a little confused if MGUS is benign why would we research on myeloma site for information I was diagnosed in November and I’m in the “wait and see” . You’re right , I hate it. Going in April for new CT and bloodwork. I eat very healthy. I exercise by walking every day and drink a gallon of water. I don’t know what else I can do. Maybe supplements I heard curcumin could help but I’m not sure who to ask about that. I keep trying to focus on the fact that it’s a one percent per year so I am 99% to the good. Next year I’ll be 98%. That’s the way I see it, but it doesn’t stop my mind from wandering.Kleo

@dianelouchart65 Welcome to Mayo Clinic Connect! Yes, it will often take several different tests to determine exactly what is going on with us. It's nice to be able to have accuracy, and get to understand our situation. As you will see here, MGUS is considered a benign condition, and the vast majority of people do not progress further. The "watch and wait" approach is considered standard protocol, although as patients we might find it frustrating!

myeloma.org is the website for the International Myeloma Foundation, and has a ton of educational material there for you. Healthy diet, reducing stress, moderate exercise will go a long way not only helping you feel better about yourself, but give you a chance to focus on being the healthiest you can work towards.
Ginger

@kaynice Welcome to Mayo Clinic Connect. Unfamiliar terminology and all can certainly be frustrating, as we look to get more information.

While everyone is different, here is the website for International Myeloma Foundation, that has a lot of good articles for you to get lost in! myeloma.org
Ginger

I do. Wish I knew more about what the specific numbers meant.

After 3 months of tests and being poked, I was diagnosed with MGUS.

I do and research tirelessly with no answers...not to my satisfaction

I was initially encouraged by the combined results of the Curcumin study you shared. However, upon further review of the table I’ve attached, I noticed that only patient #12 has an IgM-related condition like mine. It seems that after three years of taking Curcumin, all of her markers worsened. Perhaps I’m misinterpreting the data, but based on this single study, it appears that Curcumin may be doing more harm than good in IgM cases like mine. Now that I reflect on it, this is the only study I’ve encountered that provides a detailed breakdown of the specific changes in markers.

@hsminc
The body's reaction to trauma is certainly interesting. And any surgery is certainly traumatic. I have pain when I walk that keeps me from consistently exercising. It's really hard to know what is best and what will have the least amount of negative impact. My first hip surgery was 2016 and it was such a relief. I'm going to forge ahead and hope for the best. I'm so glad yours was successful.

I was diagnosed with MGUSand CMT (Charcot-Marie-Tooth Disease), which is a rare peripheral neuropathy in 2022 by my neurologist at Mayo and then it went to Biclonal gammopathy. My neurologist had been monitoring my BGUS and I had kept asking about going to a hemotology oncologist. My general practitioner, at a wellness check, was adamant that I see a hemo/onco. I approached my neuro doctor. He talked with one of the MGUS hemo/onco at Mayo and he said that since I was low risk to go back to my GP and either have them monitor until an event happened that would warrant me seeing a hemo/onco or find one on my own. After reviewing this with my GP, she has sent in a referral for a hemo/onco. I am now waiting on a call from them. I was disappointed that I couldn't stay with Mayo concerning this matter, but you keep on striving to advocate for yourself and trust in God's guidance. This is not something that I dwell on, just want to be monitored. Each day is a gift. I really appreciate this forum and those who participate.

My hematologist expressed concern that my MGUS could be morphing into smoldering myeloma. I went back in my records to 2015 when I had two total knee replacement surgeries. My free light chains increased after each of these surgeries but decreased after a period of time. I had regional anesthetic for both of these surgeries.
My hip replacement was done in 2021. My femur head had broken off and I was a mess. I could not walk 20 feet without screaming. This was Covid time and hip replacements were considered elective surgeries. I finally got scheduled and surgery was a miracle. Again I had regional anesthetic. The pain was gone and I could walk fine without a walker three days later. Interestingly, my free light chains (lambda) )escalated by 100 percent. Following the surgery, the free light chains decreased to almost baseline.
My main concern with general anesthesia is the Mayo research that indicates an effect on cognition in “elderly” people.
One Mayo study indicated uncertainty whether it was inflammation caused by surgery or general anesthesia. This same study did not know whether regional anesthesia could have the same effect.
I have had six major surgeries in my lifetime starting with a Caesarean section in 1966. The hip surgery was definitely tbe easiest. I did not need pain meds after although I took a couple of tylenol because it was prescribed - - typical pain meds like tramadol and hydrocodone were also prescribed but they were not needed.