Does anyone else have MGUS?

I was diagnosed with mgus a few years ago. I've stayed stable, no progression. I had several tests including a bone marrow biopsy, which showed 4 percent cells. I was going to my oncologist every 6 months for labs, then once a year because labs looked good, showing just a trace. Blood count, organs, all good. I do have a very low IGM count, which are white fighter cells for infection, so i do get sick quite often .
Next appt is the 30th and I have a few complaints this time...I get severely tired and very achey, my throat actually hurts, and even my voice gets weak. I'm very active. I look after my baby grandson, and my parents in their 90's who still live on their own, thank God! So I really struggle on those days when this fatigue hits, I must keep going for them. I started having pain in my feet if I'm standing. I actually bought a stool so I can cook and work in the kitchen...I get so exhausted and body pain , I need to sit down. I developed some type of painful hard lump on the side of my inner ankle too, so that adds to the discomfort. I do have osteoporosis, but I don't take meds for it, side effects didn't agree with me. Anyway I'll be mentioning all this next week, and we shall see. I'm not at all worried, just like some explanations.

That’s wonderful news about the MRI results, tatajess! Now you can exhale. ☺️
Are you still having the bone pain though? Will your doctor be following up with those symptoms?

Good morning. Hope you had a good Thanksgiving. Good news. My mri showed nothing of concern. Thank God. Thanks for your words

Just the mri. Scary

Don’t get ahead of yourself-very hard to wait on all the lab results to be interpreted… we’ve all been there.

Do you have evidence that is concerning yet? Lots of potential causes that could be found.

Hi. I was diagnosed in January. Very scary. My mother has mm. They say it's not hereditary. I'm in pain. Bone pain. Just did an mri. Waiting on results. They don't look good. I'm. Hoping it hasn't progressed to mm. Anyone else on here. Have pain

I’m so sorry you and your partner went through that 😔❤️‍🩹
I do very much hope the whole foods are successful in helping you.
Big business for food has a lot to answer for, I think internationally, along with other manufacturing or supply chains that results in toxicity in environments that supply water and contaminate soils beneath housing and crops used for human consumption.
From as far back as I remember, I have not consumed any carbonated flavoured drinks (cola, etc), and only 100% juices, or water. I just did not want that in my body, only having it very rarely (maybe once a year) when there was nothing else to access (and it made me feel unwell, so I really don’t know how people feel if they drink these types of liquids regularly). My brother used to use cola for cleaning rust and tarnish off his bike - there was no way I was going to be drinking it.
Unless without other choices, I’ve always tried to eat whole unprocessed foods, and most recently I was on Entyvio infusions for colitis, however I kept having significant medical reactions to it, so I had to stop. It only helped minimally initially and then stopped working anyway - so the doc wanted to double the dose..with having to take steroids and high doses of antihistamines to control throat and airway issues for at least a week after each dose, I found this to be unacceptable clinical reasoning, and I stopped the drug. I then researched how to heal my bowel from the lymphocytic colitis that was throughout the entire large colon. It took 9 months of strict and gentle changes from surviving on a liquid supplement diet of Nestle Resource/Fortijuce/Fresubin, because that’s all I could hold for more than half an hour, to eating all whole foods now. I ate whole foods beforehand, and I don’t know what caused the colitis but I suspect it is not primarily colitis but a reaction of my immune system to the bowel content or wall or bacterial array, that set it off. I had a recent colonoscopy and besides polyps and the diverticulosis there was very little lymphocytic colitis present. And I feel so muc better not injecting myself with Entyvio anymore due to the difficulty it causes in my lungs and ability to breathe, as well as having high doses of steroids IV and oral antihistamines that were making me feel unwell.
Despite a whole food diet within what my bowel can tolerate, I do have changes progressing, and this is what I wanted to share: https://ashpublications.org/hematology/article/2020/1/380/474349/Monoclonal-gammopathies-of-clinical-significance in case this is interesting..MGCS is where secondary issues arise to MGUS, and the symptoms cause significant illness.
I called my disorder MGCS and continue to explain this article/give them a copy whenever I see a new doc and I want them to know the significance of this ‘undetermined’ condition, hoping to illustrate the gravity of impact of these symptoms which aren’t cancerous, as well as demonstrate that dismissiveness and apathy will not be accepted while I am in the room with them, because I have presented reasonable corroborative medical research along with my objective test results to shut down any ambiguity that may arise regarding my genuineness. In other words, don’t tell me I have munchausens, ever again. Now, they seem to think I have MGRenalS with light chain disease of some sort, or I’ve morphed into SMM (in two years after MGUS diagnosis).
There’s other bits of research out there regarding formally investigating and accepting that ‘MGUS’ isn’t the zero effect/symptom disorder that some medics try to erroneously train us to believe, and that it’s worth reviewing the entire clinical approach towards the false belief that it is benign in all ways - if that was the case, then it simply wouldn’t exist. You can’t have a disorder that is known to cause some non-cancerous effect and have the progression (fast or slow) to cancer, and then consider it to be of no effect; that makes zero sense. Why monitor it if it does no harm? Nonsense like this must come to an end - it’s an avalanche of perpetual gaslighting! 🤭
I’m being facetious here, however I think there is weight to the underlying reasoning of stopping the concept that MGUS is a mostly homogenous disorder that isn’t seriously potentially harmful in and of itself.
The other component I want to see researched is retrospective longitudinal investigations (adjusted for confounders like limited data when MGUS wasn’t as widely known or tested for), to illuminate the question of whether MGUS/MGCS is growing across populations (sex, genetic background, age, geographical location, chemical exposure, and financial access/nutritional profiles, etc), and then determine rates of increase (if so) in societies across these populations. Then I want to see detection methods improve, and preventative research undertaken (how to stop it developing in a high risk individual per the data). But this will need to start with the medical and research professions acknowledging the magnitude of the problem first and foremost, and for funding entities to grant access to the funds required to conduct robust research and development of detection and intervention methods.
Take good care and I wish you all the best at your next appointment 🌺

Well expressed and true. As I watched the slow demise of my beloved with late Stage III, High Risk MM I often wondered why the acronym for it's pre-curser was not MGDS indicating "Determined Significance" as it was CLEARLY Significant.

I am grateful for the research, although limited, that is basically being done on our behalf. As stated in prior comments, I'm involved with Dr. Urvi Shah at Memorial Sloan Kettering with a Whole Food Plant-Based Study. Worth a try. Only time will tell. I go back for my one year and final study visit which is also my first year subsequent to diagnosis of MGDS. So far so good.😎

As mentioned by ChefT | @cheft | 6 days ago, "The big 3 food companies that basically own the American food supply fill our foods with chemicals in the form of additives....Decades ago food manufacturers removed fats (that are healthy) and replaced it with sugar. Sugar is cheap and addictive. Sugar also wreaks havoc on the body causing inflammation and and a ton of other complications....Combine that with striping nutrients through over processed practices our food is no longer nutritious, it’s trash and filled with chemicals....Look at Europe, they just banned many General Mills cereals due to chemicals."

Thank you for all the research you too have done on our behalf as well as your informative and helpful posts. 🙏

You are absolutely admirable and so positive minded! Bravo!

Here are some of my latest results. Mayo doctors still have me at MGUS stage and progression slotted at 1% per year. They say I’m low risk and have me to continue labs every 6 months. I do take 6000mg of Curcumin with Omega 3 every day.