Diagnosed: MGUS

Posted by sandramgus @sandramgus, Jul 29, 2024

Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!

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Patty, Volunteer Mentor | @pmm | 23 hours ago

In reply to @paulita "Thanks for the reassurances. There are so many moving parts to this disease. My kidney function..." + (show)

@paulita, how are things going for you?
Patty

mcgirene | @mcgirene | May 10 5:16am

In reply to @pmm "@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" + (show)

@pmm Hello Patty,
Don’t know why but I can’t get past the verification process, so can’t read the article. Any chance of giving me an indication of what it says about MGUS increasing risk…of what. Thanks, Irene

lgb55 | @lgb55 | May 9 2:13pm

In reply to @pmm "@lgb55 I hear you! I am experimenting (with physician approval…hem/onc, PCP and RD), with 2000 mg..." + (show)

@pmm
I’ve heard curcumin is good for most anything. As of now I only take a blood thinner. Don’t want to take that but with Afib there’s stroke risks. I try to do natural things to help myself. With MGUS we don’t know the cause so it’s hard to take something for that. Just be as healthy as we can and pray God watches over us !!!!!!!

lgb55 | @lgb55 | May 9 1:53pm

In reply to @pmm "@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" + (show)

@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.

lgb55 | @lgb55 | May 9 1:37pm

In reply to @kayabbott "@lgb55 MGUS is considered asymptomatic, although neuropathy can be associated. My MGUS was detected 10 years..." + (show)

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

Patty, Volunteer Mentor | @pmm | May 9 12:47pm

In reply to @kayabbott "@lgb55 MGUS is considered asymptomatic, although neuropathy can be associated. My MGUS was detected 10 years..." + (show)

@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.

Patty, Volunteer Mentor | @pmm | May 9 12:45pm

In reply to @lgb55 "@pmm You sound like a very positive person. I really try to be and am so..." + (show)

@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?

Patty, Volunteer Mentor | @pmm | May 9 12:22pm

In reply to @lgb55 "@tsch If you should find any studies on that I would love to read it. I’m..." + (show)

@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

kayabbott | @kayabbott | May 9 10:18am

In reply to @lgb55 "@tsch If you should find any studies on that I would love to read it. I’m..." + (show)

@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 | @lgb55 | May 8 4:48pm

In reply to @pmm "@tsch when I go in for my quarterly check ups one of the things that they..." + (show)

@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.

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