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 6 3:36pm

In reply to @pmm "@lgb55 oh and I forgot to say…kidney involvement is called MGRS (renal significance) and is VERY..." + (show)

@pmm thank you Patty for replying to my message. Especially for the MGRS input. I know little about this and any information is appreciated. I get very frustrated with hearing “ we just have to watch it”. I would feel better if there was something I could be doing to help myself. I’ve always lived a clean life style so the regular : don’t smoke don’t drink will help you just doesn’t apply to me so there’s nothing for me to try.
I hope as I read the comments from others I can pick up something that might help or that I’ve not heard from my oncologist.

doriprovince | @doriprovince | May 6 3:46pm

Google makes it sound so much worse! I have some sensations in my arms and upper torso that almost feels like someone is holding my arms tight then releasing them, very exhausted, find it hard to sleep and my legs at night are a nightmare with pains... constantly moving them. I am sure not all of this is related.

lgb55 | @lgb55 | May 6 5:00pm

In reply to @tsch "@lgb55 I too have been diagnosed with MGUS, but am not worried as the chance of..." + (show)

@tsch
Thank you for your reply. I wish you well and hope you have a good oncologist watches over you.

lgb55 | @lgb55 | May 6 5:24pm

In reply to @swalex "@lgb55 Hello, Maybe you find some of your questions answered in this link: What Are Monoclonal..." + (show)

@swalex
Thank you for the link. I welcome all information I can get.

8positive | @8positive | May 6 6:41pm

In reply to @lgb55 "Hello to all. I find these comments so familiar to questions I’ve had over the years..." + (show)

I have been doing the mostly plant based diet which has kept my IgG kappa stable I think. It also keeps me away from lots of unhealthy food choices. Sloan Kettering has a clinical trial of this for MGUS. Veggies and fruits are delicious too!

lgb55 | @lgb55 | May 7 3:05am

In reply to @8positive "I have been doing the mostly plant based diet which has kept my IgG kappa stable..." + (show)

@8positive
Thanks for your input.
I find that my body does better on veggies. My down fall is sugar. I love a good cookie !! I do try to eat clean but my oncologist hasn’t mentioned much about diet helping except no alcohol or smoking which I never have anyway.

tsch | @tsch | May 7 2:40pm

In reply to @lgb55 "Hello to all. I find these comments so familiar to questions I’ve had over the years..." + (show)

@lgb55
If you have MGUS, I would think your kidneys are probably ok, as with MGUS the M protein is very small. Maybe I am incorrect. You need to trust the oncologist I think or find another one. This one is telling you, you are ok, I think. How often is he checking your blood levels? Sometimes its 6 months and sometimes yearly. Also if you have has MGUS for years, that might be good? The %age of cases that progress to MM is small actually.

lgb55 | @lgb55 | May 7 5:19pm

In reply to @tsch "@lgb55 If you have MGUS, I would think your kidneys are probably ok, as with MGUS..." + (show)

@tsch
Thanks for your reply.
I have had MGUS for 3yrs. I am checked every 6 mos. It seems my protein levels have gone up some each time. I also have Afib and my cardiologist told me the protein can be a factor for my Afib. So it seems MGUS could affect other things. I have not had tests that has proven that.

tsch | @tsch | May 7 6:27pm

Lgb55
Its hard when one thing can affect another. Afib is so common as is MGUS. Its good you are checked regularly and if numbers are of concern, at least whatever it is will be caught early. Is there a test to link MGUS and Afib? Maybe there isn't one. But it is an interesting link if its real. I have not read that M protein affects Afib. I will look into it now.

lgb55 | @lgb55 | May 8 7:24am

In reply to @tsch "Lgb55 Its hard when one thing can affect another. Afib is so common as is MGUS...." + (show)

@tsch
If you should find any studies on that I would love to read it. I’m thinking there must be side effects of MGUS that is different in everyone.

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