Diagnosed: MGUS

@lgb55
Sorry, I have no specific studies to cite. I think everyone is different and alot can depend on if you have other medical conditions maybe at the same time. My primary said the chance of progression is 1% a year from MGUS to MM, and that is widely published. You can do a search for Afib-MGUS relationship maybe. People can report all kinds of symptoms no matter that situation, and that maybe points to all the differences that are possible. I would think either the cardiologist or oncologist should be able to give you information.

@lgb55 sugar is absolutely my drug of choice! I feel you!

@tsch when I go in for my quarterly check ups one of the things that they always check is my kidney function. So far so good! I’m always grateful for the good medical care I get “watching and waiting“ related to MGUS. I would prefer not to have it, but since I do, I’ll take it!
I try to look for the positives.

@pmm
You sound like a very positive person. I really try to be and am so thankful that I haven’t progressed any further. I just don’t want to look back someday and think if only I had known to do a certain thing that would have helped me but never found out about it till it was too late. Guess that’s why I’m looking for any thing that I haven’t heard before.

@lgb55 MGUS is considered asymptomatic, although neuropathy can be associated. My MGUS was detected 10 years ago following my polyneuropathy diagnosis (although I suspect is is more tied to my Celiac Disease because it hasn't worsened on a GF diet). If someone has a pre-existing condition it could potentially worsen it. I didn't get fatigue symptoms until after mine progressed to SMM two years ago, and likely because I already had chronic kidney disease. The sticky kappa proteins were high enough concentration to hit my kidneys. Here is one source on symptoms: https://uamshealth.com/condition/monoclonal-gammopathy-of-unknown-significance/

@lgb55 I think this might be what that doc was referring to. https://ashpublications.org/ashclinicalnews/news/6475/National-Cohort-Study-Suggests-MGUS-Increases-Risk

@lgb55 I hear you! I am experimenting (with physician approval…hem/onc, PCP and RD), with 2000 mg of Curcumin daily.
My numbers, with the exception of post-surgery, have remained stable. It’s very hard to justify cause and effect here because I have celiac disease, type two diabetes, I’ve had medication changes, and I’m trying to eat healthier and lose some excess pounds.
I know that many of our members are trying various dietary and supplement interventions. If you search for turmeric or curcumin, some will come up. Also plant-based diets seem to be used by some members.
There are very clear messages from the medical community about the benefits of living healthy. For the most part, I think that helps as much as anything above and beyond I can try.
Having said that, people have found benefit in all kinds of intervention. I think it’s important to feel as though you’re doing everything you can to support your overall health. In the unlikely and dreaded event that we have progression from MGUS to smoldering or multiple myeloma, we will have our bodies and minds right to fight the best possible fight.
Will you let me know if you find something that works for you?

@kayabbott UAMS is my “locus of control” for almost all my medical specialties. Sadly, I could not get into them in a timely manner when I was first diagnosed with MGUS. Should my MGUS ramp up, I definitely would look to them for at least a second opinion. They have an excellent multiple myeloma department. As for now, I am happy at CARTI.

@kayabbott
Thank you for the link you sent me. It was very informative.
I wish you well.

@pmm
Thank you for that link. That was very informative and a bit scary. That’s probably what my cardiologist was referring to. Sad that we don’t have enough studies to prove some of these findings. IMO there’s not enough research done because not that many people have MGUS.