MGUS diet: Any tips on food to enjoy or prevent progression?

Dear 1oldsoul: After reading your message, I’m impressed with your positive attitude and the results of your effort with diet and exercise. I’m 82 years old, still think I’m 40 …was diagnosed with MGUS just last week and have been down and out about it. Having more negative thoughts than positives. I much like you had feelings of being unstable, reduced energy and find myself sitting more just contemplating. I had CT scans, MRI , PET scan and finally blood work by neurologist that found all panels normal but Mprotein abnormal. Took a few more blood tests and a 24 hour urine test that I was told was very remarkable because it showed ZERO Mprotein. So as of now..I’m told..no Mprotein, no anemia, no kidney disease..I’m to see them in 6 months. To me I find it very unbelievable that in 2024, the medical field has found no medication or treatment to address this.. ie it’s not 1824. Bottom line I’m trying to find a diet that adds antioxidants —food and drink…going to change my diet and start exercising more. Are you saying you had symptoms but no longer have them? You are feeling normal?? I feel weak and zonked out…your positive feedback will help me tremendously …how long have you had MGUS?? Looking forward and hoping to hear from you soon. Thanks so much. Bob

I was diagnosed with MGUS 17 years ago when my neurologist was looking for MS because of the numbness I had in my throat. No MS only MGUS was found. Shortly thereafter I embarked on a major career change and became a pastor for 15 years!
I am now 70 and I have seen a hematologist every 6-12 months all these years. My numbness/neuropathy has increased over the years to include the left side of my face and 4 of 5 toes on my left foot. I do not have diabetes.
Went back to neuro for a leg EMG last year and the conclusion was negative for neuro involvement...but likely a build up of the "abnormal proteins" from MGUS.
Bloodwork is stable except for a decreasing Kappa-Lambda free light chain ratio, which no one is getting excited about.
I workout with my Silver Sneakers 2-3 times a week walking 4-6 miles per week and strength training. I eat lots of fresh veggies and try to eat healthy otherwise but I don't have a special diet except limiting sweets.
I have a healthy Spiritual life and figure when God is done with me, He will call me home, but until then I will just keep working for Him.

Thanks for feedback

I don't have an MGUS diet. I have had celiac disease (gluten free) for 15 years so diet is already constrained and mostly organic. It can be handy to keep a food log, just to see if you have developed any food intolerances thru time.

MGUS is asymptomatic unless it progresses to MM, which happens in a small percentage of cases. I am 70, so 62 when diagnosed. My Kappa/Lambda ratio has been gradually ramping up, but still MGUS. MGUS is a waiting game so there isn't much one can do outside of taking care of oneself, staying healthy thru diet, exercise, minimizing stress, and getting enough sleep. Getting diagnosed is hard, and there is grieving associated with slapped upside the head with one's mortality, but it can also be an opportunity to see if you need to make changes in your life. ResearchGate is a good source for peer-reviewed papers on MGUS, MM, and other science.

Kay: just read your post.. I was diagnosed just last week..and I’m thinking about it daily.. mostly negative but I guess that’s normal. Have you had MGUS for 8 years?? Wow. How have you coped on a daily basis?? Do you have any symptoms?? Interested in hearing from you.. how old were you when diagnosed??
Thanks
Bob

Just me again.. you would think that some doctor, somewhere, with all the advances in medicine and technology that they would come up with a treatment or medication. If you hear of anything let me know.

By the way, if you have a recommended MGUS diet that you can send by email…I would appreciate it. Generally I know, ear fruits vegetables etc and exercise.
Thanks again.
Appreciate you
Bob

Patty…thanks again for taking the time to give me further insight. I’m 82 years old and in my mind think I’m 40 and often joked with friends that I don’t know what I want to do when I grow up. Having the unstable feeling over several months and just not feeling up to par, had several tests done..MRI etc then the blood panels by the neurologist that found the abnormal Mprotein..I find it very strange that the medical field knows all about MGUS ..what it is etc etc..yet know NOTHING about treating it with medication or treatment. That’s to me is the discouraging part about it. This is 2024 not 1824. Are you are of any one in the medical field trying some radical treatment..other than bone marrow transplant. ?? Some thoughts going forward..
1. Having MGUS for 3 years.. do you have any symptoms ?
2. Are your follow-ups with a hemotologist or neurologist?
3. The fact that there no treatment to me is rather depressing
4. It’s only been a week..but how do you not think about it on a daily basis??
5. I’m fast to realize that —reading all these patient posts can not be a mental positive. So I’ll post you only.
6. I just want to live..to do things without constantly thinking about it
7. I realize it’s not cancer…and progression is slow..but my concern is damage to other organs over time..scary to me.
8. And lastly, no treatment as MGUS —but can then treat should cancer develop seems ridiculous.
Hope to hear from you..Stay well
Bob

@bigbob5461
I know. Especially for those of us who typically take the bull by the horn, it is hard to do the “watch and wait” thing. Your diagnosis story is very similar to mine in that I had no m protein in my urine, low numbers, no bone marrow biopsy.
I’m 72 and have never gotten old before. 😂 It’s hard for me to know what is attributable to natural aging and what might be related to this blood disorder. So initially, every ache and pain or food that didn’t agree with me worried me that it was symptomatic of the MGUS.
I do have some peripheral neuropathy in my feet, but I also have type two diabetes so etiology is hard to determine.
In the unlikely and unfortunate event that my MGUS does progress to multiple myeloma, I am confident that it can be treated effectively. The gains in the last decade have been monumental in terms of what they can do to treat multiple myeloma. You mentioned stem cell transplant. That is one of the options for MM, but that is no joke. That is a big deal. There’s been a lot of advancement in the pharmacological approach to treatment as well. So there are options that having long, and what I’m sure my doctor would consider tedious, discussions about how to approach this MGUS thing, my approach is to always opt for the least invasive approach. I have also decided not to do a bone biopsy now. My numbers are low and after three years they’re very stable. I feel good. I am active and participate in life fully. I try to eat a healthy diet and exercise. I try to keep my mind right about this diagnosis. It is not cancer. In all probability it will never be cancer. Even though we don’t treat it, I do work pretty hard not to die of more likely culprits such as heart disease or other types of cancer. Living healthy is, for me anyway, a good focus.
You have to keep in mind that 5% of the population over 70 likely has MGUS. I wonder how many have it and don’t know that they do?
Let me know how you are doing with all of this, and if you find ways to alleviate or reduce your anxiety, please do share so that we can all learn from your journey.

Sure..thanks for your reply..most appreciated. Sequence of how the diagnosis came to be.
I’d been feeling —basically not myself…head not clear, some loss of energy and a sense of not stable. Went to neurologist who order several blood panels..all were normal except one showed Mprotein. Then couple more blood tests and a 24 hour urine test. After the test I was told by Cleveland Clinic that the urine test was remarkable as there was zero—no Mprotein. They said bone marrow not recommended would be very low so I’m scheduled for retest in February. I really thought whatever I was feeling would be addressed with treatment or medication and hard to believe this is something that can’t be reversed . I mean in 2024 no treatment. ?? Stem cell or bone marrow transplant??
Thanks for you time and feed back.
Bob