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

Hi, I'm new to this group and is excited for any feedback. I was diagnosed with MGUS a few months ago, does any of you have any neurological symptoms with it? I have terrible episodes of vertigo symptoms and leg weakness where I can barely walk some days. Does anyone else feel this?

Hello, sorry about your diagnosis. I’ve found MGUS/ Smoldering Myeloma or Multiple Myeloma all affect people differently. Many providers say there is no or shouldn’t be any symptoms at the MGUS stage. With that said, many people including myself have experienced leg aches, pain, discomfort.
Many people have changed their diets in various forms and found benefits. I have found some success through Curcumin and Omega supplements. Overall there is evidence that staying active and losing excess weight will benefit, that’s pretty much a given for any ailments. Adding photo for the Curcumin I take 4 times the suggested amount. I don’t recommend starting that high but build up to it. There are some clinical trials to support it.

Hi @nette6, welcome to Connect. I’m sorry to hear that you’re having leg issues. Many of our members have symptoms that may be attributable to MGUS, or perhaps to a comorbidity. It’s hard to tell. I was diagnosed with MGUS about three years ago, about the same time I started to experience peripheral neuropathy in my feet. My hem/onc doc thinks it is most likely attributable to my type 2 diabetes, which is well controlled by medication and diet. To me that seems too coincidental.
But…I don’t know.
Generally speaking, it’s important to first ask your hematologist/oncologist about your symptoms. He or she needs to get a handle on what is going on there. Finding etiology is generally a series of “rule outs,” testing to eliminate first the most obvious culprits then working their way through more subtle connections. It can be a frustrating process, but I would want to know exactly why this leg weakness and vertigo are happening. It may not have anything to do with MGUS. Or it may.
I hope you have found a good specialist who listens to your concerns and is diligent in providing good, comprehensive care for you.
We who are members of the MGUS club are all so different in how this condition presents. You certainly are not alone in having questions about how this condition plays out.
Are you being scheduled for regular bloodwork and other tests to monitor your MGUS?
I’m looking forward to hearing how this plays out for you and wishing you the best possible outcomes.
Patty

Regarding curcumin, it is not readily absorbed in the GI tract so best to take "bioavailable" curcumin that has been changed to increase absorption, or curcumin with black pepper (the peperine increases absorption but also intestinal permeability [a problem is someone has leaky gut from celiac or other]). The curcumin is antiinflammatory and research suggests is decreases TNF (tumor growth). I take a couple of pills/day for MGUS (8 years). No symptoms other than minor balance (I do PT and balance half dome for the peripheral neuropathy).

Good morning nette6. I was diagnosed with IGM MGUS in 2021 at age 67 by a gastroenterologist I saw for ongoing gut disbiosis/IBS. At that time I was experiencing terrible insomnia, intermittent anxiety, occasional weakness in my legs and rare occurrences of some numbness in my feet and on the right side of my body. I went through the gamut of CT scans, neurologists and neurosurgeons and no cause could be found. I think you will find in this forum that there are many who experience symptoms despite the experts (my hematologist included) stating that there should be no symptoms with MGUS. I do believe that various medical specialists should be consulted to rule out all other causes of a symptom. Have you consulted a neurologist? After seeing many specialists, I retained the help of an online naturopathic doctor and although at the time I was not seeing any progress and felt that I had wasted my money, my insomnia and anxiety are all but gone now and I have not had another episode of numbness. I believe in the healing power of prayer, of getting tested for food sensitivities, of eating an organic (as much as possible) Whole Foods diet, at least 70% plant based, no fast foods or packaged foods, no sodas or artificial sweeteners, exercise of some kind (I have walked 3-4 miles a day for almost 5 years and walked that much on weekend before I retired) and getting tested for heavy metals by a naturopathic doctor. Two different tests by two different doctors 3 years apart indicated I had a high level of aluminum in my body which is neurotoxic and because I have always been super sensitive to drugs and many supplements it has been a long road to healing. At my last appointment with my hematologist in November he said that he felt the MGUS was not progressing nor would it. Our bodies have an innate and complex capacity to heal and it is the body that heals itself, not the doctors, if we can just remove that which is causing inflammation and toxicity. And even if you are over 65 years old, don’t ever let mainstream doctors tell you that “it’s just old age”. I had terrible hypertension 7 years ago and had to take blood pressure medicine until I decided to give up all caffeine and start walking more and now my blood pressure is perfect. When my cardiologist asked me how I overcame the hypertension and I told him, he told me that he wished all his patients would do those two simple things because he knows it will cure most cases of hypertension. I hope my story is of encouragement to you and I will keep you in my prayers nette6.

Hello everyone…had MGUS diagnosis..would like some positive feedback from those having same…
1. How do I stop thinking about it everyday?
2. From doing some reading, sounds like slowing progression best done with daily exercise and diet.
3. I’m on blood thinner so taking supplement ie Tumeric, garlic or others can prove dangerous as they thin blood
4. I was also surprised that it can’t be treated..

Your replies are appreciated.
Bob

@bigbob5461
Greetings and welcome to Mayo Connect.
I don’t know how recently you got the diagnosis, but I think it’s quite normal to be a bit preoccupied with your health. That’s very relatable.
I am three years out from my diagnosis and I found that as time went on, I felt OK and my numbers were stable, I felt reassured that what I read about the very low risk of progression might actually be accurate.
Almost everybody who is diagnosed with MGUS was diagnosed when they were looking for something else.
Which means for many there are no symptoms. Others can connect the dots between symptoms and MGUS . Bottom line is that MGUS is not cancer and the risk of progression to cancer is very low.
It’s hard to think in terms of “up side” but three years out, I have come to appreciate the excellent care I get as a result of this diagnosis. For the first two years I got blood analysis every three months and bone scans every six months. This last year my hem/onc doc and I had a discussion about going six months between blood draws. I have felt quite comfortable about it so we will stick with this plan. Some go annually. We are all different and there are many variables to consider, including age, general overall health, co-existing conditions and level of MGUS/health related anxiety.
Find the best hematologist/oncologist with the most experience treating multiple myeloma. Someone who will answer all your question and acknowledges you as a valued member of your own treatment team. If you have confidence in your provider, you will feel less anxiety.
Don’t be afraid to utilize mental health support. Therapy, your medical social worker attached to your treatment center (hope they have one) and the wonderful humans who post on Connect…whatever you need. Take care of yourself.
I’m very glad you found us. Do you mind sharing a little bit about when you were diagnosed and what your treatment plan will be?

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

@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.

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