Anyone else have Symptomatic MGUS?

This sounds very frustrating for you. Have you gotten second opinions and thought about going to some of premier research organizations like Dana Farber? Or have you tried to find out about research trials you could be part of? There are lots of articles about MGUS out there. Dr. Drurie has a short YouTube video out there about some of the symptoms linked to MGUS.

I was diagnosed less than a year ago, and they took it seriously and did all the work ups. I have bone pain, frequent fatigue, don’t recover from infections as readily as I used to. They are checking me every six months now for any changes. They began with every three months. I have a high FLC ratio and also a low WBC. My doctor is treating me with high doses of oral B12, which has helped bring my WBC up slightly. They are watching and waiting. Right now I just try to eat healthy, exercise a reasonable amount and keep a positive attitude. I am 72, an age where MGUS is a more common occurrence.

@mgusoixi25 Welcome to Mayo Clinic Connect. There are many of us here who can certainly relate to your frustration when we feel we are not taken seriously! Afterall, we live in and with our bodies 24/7 and are aware of the smallest changes.

When I was diagnosed with MGUS, my hematologist oncologist was concerned. However, she elected to extend my return visits out to 6 months at a time, rather than every three months. Just as I was getting prepared to move 800 miles away, we discovered it had advanced to Smoldering MM. I think she felt bad she had decided to have the extra time between appts, as we could have addressed things quicker. By then, her comment was, "get a new doctor in your new area, they will give you some medicine and you'll be fine." Huh? Glad to say I now have a very caring oncologist.

If you feel you are not receiving the care and treatment you deserve/need, please look into a second opinion and another medical team! Be your own advocate. Do you have a large teaching hospital near you, or a Mayo Clinic campus? @nancy1900 has good suggestions. Please let me know what you will do, and how I can help?
Ginger

I'm so sorry you're going through so many of the same symptoms I've been experiencing, and that you, as well, are not getting the attention you should from the medical community. My bones started burning about three years ago. Because I had an old scleroderma diagnosis that every single doctor ignored (because I'm a man...this is a "woman's condition" they kept telling me...not true), they shoved the bone burning symptoms I had under that rug for a while, even when my bloodwork was showing kappa light cells and BenceJones, hypercalcemia, and I am so tired that I wake up feeling like I haven't slept in years. But none of that mattered. The oncologist I FINALLY got to see (10 months after my first positive blood test) didn't even examine me. She "felt" my throat lymph nodes before I left for good measure and told me: MGUS, nothing to worry about. I then attended a local MM support group meeting and told them of my diagnosis and symptoms, and was very quickly told that MGUS and symptoms only mean one thing: it has progressed....go back to your oncologist. But how can I when I am met with a complete lack of interest on her part? I'm seeing my GP again in August to discuss further consults with other doctors. I don't mind driving hours out of town to see one, but this pain has got to stop. I now use crutches to get around because I have no balance, my legs are growing numb, but the tibias, feet, hands, forearm, ribs, spine and right hip bone are constantly hurting and burning. I now have spots showing up everywhere on my body, and my GP says that in 66% of MM cases, one finds Melanoma. Great. So now I'm waiting to see a dermatologist. I hope the latter is more professional and efficient than the MM "specialist" I saw. I wish you the best of love in getting all of this resolved and treated as it should be.

Sounds very frustrating for you. Seems every institution including Mayo has a “watch and wait” protocol for MGUS. We are all different and our bodies react differently to just about everything. Seems most of the information you shared about your labs would not suggest having these issues from MGUS. Have you been checked for Amyloidosis? I was very pleased with my second opinion not just because it was good news for me but because Dr. Dingli at the Mayo explained everything to me, his reasoning for everything and exactly what each lab test was saying. I would highly recommend having the Mayo check things out if you’re able.

Hi there nancy1900, thank you very much for your kind reply and wonderful suggestions. I want to apologise - I am in Australia, and I am working with the public medical system so I do not have access to a second opinion without a long wait list that would leave me without any monitoring by haematology for over a year (currently I have a 10 min consult with the haematologist each 4-5 months, which has been the case since august 2021). A research university in another state said I would be a perfect candidate for their MGUS study, but my doctors refused to swap me to the haematologist who was the lead in my local hospital, which meant that the potentially helpful treatment was effectively out of reach (the team in Melbourne tried really hard to get me in their trial, but the team at my local public hospital just wouldn’t play ball, and threw all obstacles they could to prevent having to swap me to the other haematologist).
I’m really sorry to hear you’re also having symptoms, and I hope your team continues to take it seriously and follow up. Thank you so much for the suggestions on interesting things to follow up on - I really appreciate it!
Stay positive, and thanks again for your support 🙂

Thanks so much for your kind support Ginger, I really appreciate it 🙂
I’m sorry you’ve had to go through that journey, and it’s great to now hear you have compassionate care from your current oncologist. I’m unable to get a second opinion without going without monitoring for extended periods and I’m concerned it’ll result in delay in potential disease advancement discovery to SMM considering I’m high-intermediate risk, with symptoms. I live in Australia so getting private quality care is extremely expensive, and I do not qualify for private health insurance due to having way too much pre-existing health conditions (so the way I understand it, what is already in existence is excluded of has long waiting periods before it’s covered, and the monthly premiums would be extremely expensive due to a combination of existing diseases and age). The last private specialist I saw cost $450 for 15 mins, and the out of pocket was around $420.
So I’m within the public health system. I’m thankful to have it, however the wait times are in the years.
I actively advocate within the current system (both with the medical staff I interact with for my own medical situation, as well as on a state and federal level, raising awareness with govt and other organisations for the benefit of vulnerable people in society) however there is somewhat little onus for medics to be receptive / responsive to individual patient needs, so often individual circumstances are overlooked (like social situations, variances from mainstream symptoms or unusual reactions to mainstream treatments - in my case, due to not responding to treatments, I have been declined further care because I do not fit the current offerings of meds/standard of care.
Hence why I engage in systemic advocacy 🙂
Thank you again for your reply, I really appreciate it!

Hey there nathangolden, I’m really sorry to read about what you’re going through, it really saddens me to know people are being effectively harmed by lack of sufficient care, especially when the knowledge is available and the treatments exist - it’s almost like a form of emotional trauma in addition to the physical suffering. I wish you all the very best and would be very interested in hearing how you go in the future. I’m also on crutches at this stage, have a bunch more ‘freckles’ without any sun exposure in years that came up in the last 9 months, but because Australia is the sunny country I’m consistently informed it’s due to sun exposure (I’m not believed that I am not in direct sun - the reason I’m not in direct sun is because of former high dose immunosuppressants which make a person much more prone to risk of skin cancer due to sun exposure - the medics know this however they choose to insinuate I am lying about sun exposure instead as the mechanism to excuse addressing these spots). I wonder if you also have growths on your bones? I have lumps like little heads of cauliflower growing out of the sides of my iliac crests, which the haematologist said are nothing despite not examining them. I also have an enlargement on my left tibia that has come up over the last 8 months or so. I also have little red dots of blood in my skin all over my arms that constantly appear then heal, and reappear. I know that something is very active, but here the public medicine system gives me the clear impression that people are generally hypochondriacs in nature, and should be dismissed in face value unless they prove otherwise with such blatant serious illness that it simply can no longer be ignored - but as a physiology, that creates much higher risks of progression when dealing with inherently progressive diseases.
The other aspect is blanket stigmatisation..I’m tall, look younger than my years, and have the residual characteristics of once being fit, so I’m often told “you look fine, you look like there’s nothing wrong with you” which to my ears is the most deflating/disheartening thing any person with medical education can say, because it makes me see how much of a failure the entire system is in that moment, especially when it leads to no further investigation - based solely on this ‘glance’ assumption despite objective findings demonstrating otherwise.
I wish you all the very best, and please do update how you go in august 🙂

Hi there ChefT, thank you kindly for your reply 🙂 I have been concerned about amyloidosis, especially with random bouts of recurring pericarditis, so I have had an echocardiogram which did not show amyloidosis, and the last colonoscopy I had I requested Congo red staining be done to check the samples for a type of amyloidosis, which was negative. However, I do have kidney and liver changes on ultrasound, which medics haven’t wanted to biopsy, but I think it might be warranted considering +ve Bence Jones in urine, and continued altered liver enzymes. And also the mystery growths in my mediastinum (1x 5cm, the other 2.5cm, roughly round in shape). I am aware of their presence, particularly on trying to take a deep breath.
Being in Australia, I’ve not found any medics interested in proactively undertaking any targeted investigations beyond what’s considered standard. I’ve just recently requested some ana tests to see if I have some other parallel issue going on (the Gp is following up with the lab, as they lost the first lot of bloods, and didn’t label the second lot, so I may well have to go back for a third attempt at getting the blood draw examined). And due to persisting with obtaining the pathology from a tonsillectomy I had in April (I just got access to the results yesterday), I have a rare type of bacteria that can be invasive and cause progressive diseases in multiple organ systems if it’s not controlled. It’s only a problem for those who are immunocompromised (I am low in IgA), and my Gp - thank goodness - said even though she has no idea how to treat this bacteria that she hasn’t ever seen before, she is calling up a specialist microbiology lab to inquire about dose and type of antibiotics, as well as best method of administration, and she will be calling me back to act on her findings. The reason they took the tonsils is on examination they visualised like lymphoma, and so I was sent for excision. They had lots of white cells, but no lymphoma from what I read in the report I’ve just obtained.
Anyhow, I’m very pleased to hear your doctor explained tests and results to you well, that sounds really wonderful.
I’ve asked many times to be provided comprehensive copies of results relating to haematology, however unfortunately to date they have not been released. To be honest, I have other matters rather than pursue FOI for some blood test results, so I haven’t continued to ask him as I feel like a broken record.
Not to worry, hopefully the Gp will get back soon with some interesting findings and maybe treating this mystery bacteria might help.
Wishing you the best 🙂

Hi! New here also. Thank you for the imformative post! Diagnosed with MGUS 2021 after lower back surgery for a fall, and open gall bladder surgery. Having neuropathy in my hands and feet now, along with increased hip pain, and exhaustion. My bone/marrow biopsy was less than 10. Have had anemia, and with supplements that is under control. My platelets continue to fall while the mpv rises. Just noticed signs of RA, and that will be checked in repeat labs. I recently requested a referral for a new hematologist. Seems all my symptoms are being dismissed. Like yourself, I truly believe this has been going on for years.
Good luck, take care!
Susan

Like you, I think I must have had the MGus since I was in my 20's. I had anemia and a low white cell count most of my life. I was given iron, and for a while when I was pregnant Liver. The Anemia got better for a while, but seemed to be there off and on most of my life. No one has ever been very excited about it, until I suddenly had Trigeminal Neuralgia and I saw a Neurologist who ordered some different blood work, and what do you know? Suddenly , I have MGus? At my age, no one is going to get very excited about it (92) but it will be interesting. I am scheduled for blood work and a visit next month. I will try to keep you posted on my progress.
Gina5009