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

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.

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).

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

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, 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?

I have had MGUS for many years, I also have had blood clots. Currently on 10mg Eloquis a day and got another DVT. I'm so? IDK. I'm 67 years old and had 1st blood clot pregnant at 25! Does anyone else have this issue? The oncologist who keeps monitoring MGUS numbers at DHMC didn't know this!?

Thank you for your kind thoughts. I do have a seated bike, and electrics foot pedal machine. Fortunately, my appetite has behaved, but the pregabalin's side affect is weight gain. I am completely ambulatory (no wheel chair), but I seldom leave the house, because I get pretty short of breath. I did not mention, I had a heart valve replacement 1 1/2 years ago. I guess, the weight thing, is just another "Wish", I just have to learn to live with. Old ladies recreation (COMPLAINING). Once again, thank you for your kind thoughts.
Gina5009

I go to Jacksonville, Florida. Very pleased with the care there.

Which Mayo Clinic do you goto? I was diagnosed recently and trying to decide where I go.

@gina5009 Can you do seated chair exercises to help you move around? There are several youtube video series out there to follow along with. Or perhaps a floor or table set up where you can pedal your arms or legs and burn some calories? Stretching using towels or elastic bands?

Watching our diets is crucial in any health issue, and just when we want to eat something to make us "feel good" the other side of our brain is telling us it shouldn't be done, right?! [been there, done that!] Hoping this might help you in this time of stress for you.
Ginger