MGUS Symptoms: What symptoms did you experience?

@suppiskey2surv I'm surprised you haven't had a Bone Marrow Biopsy (BMB) yet. On my very first hem/ono visit for MGUS, she mentioned the BMB as an important step. We decided to postpone it until we see how quickly my MGUS progressed. A few years later and still with no symptoms, my numbers were high enough to now confirm where I was headed with the BMB. As it turned out, the BMB results changed my diagnosis from IgM MGUS to Smoldering WM Wild Type. I still have none of the symptoms that I'm sure will come, but now I know what conditions to look for.

Thank you. It is. I doubt any of these things are serious, in and of themselves, which is why I fear my local healthcare providers aren't interested in addressing the MGUS as a cause for any of it or in identifying a disorder related to it that could give me the diagnosis (if there even is one to be found) that would be something I could offer as an explanation as to how I feel a lot of the time. Until a person is given a concrete reason for the things that keep them from doing certain things, most people (including doctors, family and friends) think that person is just either making it up for attention or that it's some sort of mental / behaviorial problem. Normally, I would agree with that but when you have things showing up in bloodwork, X-rays and scans, it should be considered very "real" and unimagined. I'm not sure what I'm going to try and do, here at the local level anymore. I tried to schedule something at MAYO but they denied seeing me. So, in the meanwhile I suppose, I shall just continue with the yearly M-spike monitoring and go from there.

Thank you for caring!

@dcuste

Yes, my last BMB was in 2010, so maybe it's time for another; however, because my numbers were as low as they were back then and my M-spikes have been consistently as low as they are . . . everything here, at least, is just me being overly concerned over nothing. But, it IS something. At least that's how I feel about it. I'm not worried, necessarily, about MM anymore as I once was . . . but MGUS CAN be associated with a number of other things. That would be rare, but "RARE" is something my husband and I are all too familiar with. And, at least here where we live, even with supposedly some of the best of doctors around . . . "rare" is something that doesn't fit into their agendas. Walking into a doctor's office lately, though, with a request for a BMB would be like me asking for someone to give me a brand new car. It would be a relief to have one I could depend on, but the "return" on the expense wouldn't be there for them and my peace of mind doesn't seem to interest them in the least.

Thank you for caring and for sharing your story. I really appreciate it!

This is information I found on the internet. Hope it helps.
Causes:
The exact cause of MGUS is unknown, but it may be related to: Genetics, Age (more common in older adults), and Immune system dysfunction.
Symptoms:
Most people with MGUS have no symptoms. In rare cases, some may experience: Fatigue, Bone pain, Kidney problems, and Peripheral neuropathy (numbness or tingling in the hands and feet).
Most people with MGUS never develop multiple myeloma. However, about 1% of people with MGUS will develop multiple myeloma within 10 years. The risk of progression is higher in people with: Higher levels of M protein, Older age, and Certain genetic factors.

@sunsetchris you might check out this video regarding neuropathy and MGUS from The Mayo Clinic. It’s fairly discouraging about treatment. https://youtu.be/h79TFl8PxpU?si=j2EmcflSBuFpvGf-

Sure does! Thank you!!!!

After we figure out my husband's next course of treatment/monitoring for his kidney problems, I've decided to ask my primary for a referral to a hematologist that sees people who have MGUS, not necessarily as a cancerous condition or threat of cancer, but more as a chronic condition which can cause a wide range of some very real symptoms that can be correlated to MGUS. It's probably rare and may take some time to figure out but I think I will keep searching. If it can't be done here, I'll try again to get in to see a hematologist at MAYO.

Thank you!!!

@pmm

WOW!!! GREAT resource, though, for information on how MGUS is something that CAN and SHOULD be identified as it relates not just to malignancies.

THANK YOU!!!

@suppiskey2surv

Try Dana Farber in Boston

@suppiskey2surv I absolutely agree with a previous comment re bone marrow. You should get a baseline bone marrow. You are having , it seems to me many other unnecessary testing if the diagnosis is MGUS. Go back to the Hem/Onc and I would recommend stopping jumping around to all different types of doctors. The fracture is of significance for MGUS and possible relationship to multiple myeloma. ( i did have a hip fracture). IF you have MGUS the only doctor you should see for MGUS is the specialist in Multiple Myeloma which is a hematologist/oncologist. The fracture is possibly related and an orthopedic is a necessary addition, but too many cooks in the broth as related to MGUS. Just stick with the MGUS/Myeloma team and Primary, and let them refer you if something else pops up. MGUS is a watch and observe/wait condition. It may take years to convert to cancer if ever. I too was initially feeling anxious but after discussing all with my Hem/Onc and primary I stayed away from all unless they referred me. IE I had protein in my urine. I emailed my MGUS team and my primary referred me for a kidney scan. All negative. The only other concern for MGUS/Myeloma I see in your history is the spine and fracture. So I would recommend stop going to so many specialists and see only the absolute necessary. I might concentrate more on what could have caused it and can you do anything about that? I did much research and found that 40% of World Trade Center (WTC)survivors and workers in offices near by had a diagnosis of MGUS. I at the time was working at a very close trauma center which received many patients from the WTC. It was one hot mess with debris all over the ED. Thus I was able to get more information as to how I could have gotten it. However I cannot tell you why it appears 20 years later. But I have learned that you cannot find a cure as there is none, and it may never progress, and yet again it is a precursor to multiple myeloma. So I have an annual visit right now with the HEM/ONC., Primary monitors blood and urine every 4 months. There is nothing they can treat and so far so good. Blood work stable, an occasional appearance of the M spike and latest is elevated Proteins in urine. My M spike first appeared in 2017 and it doesn't show up but every two years, elevated but Not Multiple Myeloma which is the cancer that is associated with MGUS and maybe some lymphomas. I have taken a very lower key approach and see absolutely great doctors who do what is necessary. I am calmer, and hope to stay on top on my condition so I do not miss anything but I do have confidence in my doctors and leave the diagnosing to them. I do report any changes and let them decide the significance. Better for my mental health. Best of luck and recommend sticking with the necessary doctors and appointments as recommended.

THANK YOU!!!!

Yes, I agree. A hematologist/oncologist is the person my husband and I decided this morning is the person who should be monitoring the MGUS, IgG Kappa paraprotein. You're right . . . too many doctors have been involved to date. My primary doctor, unfortunately, was the one I was relying too much on to monitor things. She was the one who just kept referring me to different places, treating each thing as a separate issue when (at least I believe) there is a better explanation for most of it. I saw a hem/onc a couple of years ago but since my M-spikes had always been so low, all along . . . I just didn't want to clog up his waiting room when there were so many more serious (cancer) patients there; but, I think it's time to let go of that feeling. He probably would have continued to see me but I just thought it best to have my primary run the test every year when I saw her. Before in the past especially when all this started I was (and I think they were since my mother died of MM when she was my age) . . . we were more alarmed; but, now, it just seems like an annoying thing hanging over our heads that has to be "monitored". I, now, actually though think it's time to mention how fatigued I've been at times and feeling dizzy and weak from time to time. THAT is fairly "new". Putting that symptom on my past and present list of symptoms makes me think (more and more) that there really is an MGUS diagnosis out there that could explain a great many things (both from what's happened in the past and today).

If the person I see for a "re-check" isn't able to address the issue here at the local level, I am going to try and get into MAYO. My husband has a kidney specialist there whom we started to see for his "rare" kidney disease since the docs here only seemed interested in treating the multitude of odd symptoms he had and screwed up more than once, misdiagnosing him time and time again. My problem, I realize, is by no means as urgent or as life-threatening as his or anyone else suffering from serious health conditions . . . yet, when a person can't even rake leaves for more than 3 minutes outside in this beautiful weather or all but collapse because of lightening bolt pain that comes on out of nowhere . . . . there HAS to be a reason that deserves further explanation other than "Oh, geeezzz. There goes "Mom" again with all her aches and pains. Would just be nice to have the respect and attention given to the situation by someone in the medical profession who could give this a "name". MGUS, I think, is the cause for much of this . . . and it's past time for someone in the medical profession to either say it is or it isn't who is familiar with the things it can cause.

I've been able, for years, to let go of a lot of this but, the fatigue and the weakness, is pretty recent; although, some of the same things that were a problem in the past, still come and go too. Who knows. May be just another "dead end" in trying to find anything out but I think I'm done going to this doctor and that sort of specialist who says everything is just fine. There has been much research and information discovered about MGUS and what it could mean since all this started when I was younger; so, hopefully, I can find a doctor / specialist who will take the time to consider the whole picture instead of just sending me on another wild goose chase.

Thanks for sharing your story. It really helped!