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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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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)
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@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?

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@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 !!!!!!!

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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

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Patty, Volunteer Mentor | @pmm | 4 hours ago
In reply to @paulita "Thanks for the reassurances. There are so many moving parts to this disease. My kidney function..." + (show)
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Thanks for the reassurances. There are so many moving parts to this disease. My kidney function tests have increased too. I have no idea how kidneys come into play with MGUS.
I will be prepared for my haematologist appointment. He seems to be leaving it up to me to decide if I want the bone marrow biopsy. I'm happy to postpone it for a year or two or until he says We need to do it. This is a long game I think and I have to get used to waiting.

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@paulita, how are things going for you?
Patty

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