MGUS Symptoms: What symptoms did you experience?

I think fatigue is common with MGUS and may be due to anemia?

@scnana, there is certainly a lot of information out there but so much of it is specific to the various categories of MGUS. Other things factor in as well such as co-morbidities, age, general health, etc. I’m sorry that there is such a long gap between receiving the results of your blood work and your doctor follow up. So many questions.
Perhaps you can arrange for a telephone visit with your physician to get some answers about your fatigue. I was diagnosed 2+ years ago and do not experience fatigue. There are others who have mentioned it, however. MGUS seems unique to each of us but you certainly want to be assured that there is not something else causing the fatigue.
I generally advise avoiding the counsel of “Dr Google” simply because it’s hard to sort through it all with so little information to know what is relevant to you. That and he’s a glass-half-empty kind of guy. It can increase your anxiety which can actually increase your white count and make you feel sick.
Throughout your journey you will sadly have to advocate for yourself in order to receive comprehensive medical care. Not to throw shade on my medical team, but I have been quite insistent about getting the care I need. That starts with information. I want my questions answered, especially if I am symptomatic. I write them down so I don’t forget. I expect a timely response. If I don’t get one I follow up politely, but insistently. Yes they are busy, but this is your health.
Remember that the odds that your MGUS will not advance to Smoldering or full multiple myeloma are in your favor. And if it does, it is treatable. The advances made in treatment over the last decade are remarkable. Keep the faith.
Wishing you the best possible outcome.
Patty

I was diagnosed with MGUS 8 years ago; mine is gradually ramping up of kappa/lambda ratios (132 now) but I don't have any symptoms (I'm a 69 yo female). I have slight polyneuropathy but my oncologist thinks that is from celiac. If your thrombocytopenia results in decreased oxygen, then that could be tied to less energy. Hopefully controlling that will improve your fatigue It would be good to check with your doctor to see if there could be other issues.

Hi everyone. My name is Jeannie and I am 48 years old. I was recently diagnosed with MGUS. I know that the likelihood of it becoming MM is low, but it still has me nervous. I have hip pain. More prevalent at night. I’m wondering if anyone else experiences that?

I was diagnosed with IgA kappa light chain MGUS 8 years ago (69 yo woman) and don't have symptoms. I have mild polyneuropathy but my oncologist thinks that is from something else (maybe celiac). It would be good to check with your doctor on the hip pain and see what it is and if PT or other can help. I have slight lower back pain and stiffness after being inactive, but that is from osteoarthritis. Aerobic, strength, and stretching exercises keep it minor. A symptom of more advanced MGUS is bone pain from lesions (deossification of bones); that generally shows up as elevated calcium and some other markers in bloodwork as the minerals are leached out.

@jeannie215
hi Jeannie, welcome to the forum. Even though they tell you that MGUS is low risk for morphing into Multiple Myeloma, it is kind of jolt, isn’t it? A purview of the posts on the forum will quickly tell you that the symptoms, or lack thereof, of people diagnosed with MGUS, varies from person to person. And many of us have coexisting medical conditions and so it’s really hard to sort out which symptoms are attributable to the MGUS and which are not.
Bone pain is no joke as it is certainly debilitating. That’s worth a discussion with your hematologist/oncologist about some bone scans to ensure that you have no lesions of any kind. Unfortunately, even at 48, you could have some osteoarthritis, but it should be checked out.
Depending on what your blood analysis tells your hematologist about your condition, there will be several diagnostic tests ordered if they haven’t been already including whole body scans. If your physician has not already mentioned this to you, it’s worth a discussion about what he/she will do to ensure that your MGUS has not progressed. You want to make sure that you have a hematologist/oncologist who is very experienced in dealing with multiple myeloma. You don’t have multiple myeloma if you’ve been diagnosed with MGUS and I hope you never have multiple myeloma, but you want a competent physician who is proactive and engaged fully in your care. and you need someone who answers all your questions patiently, and explains his or her treatment strategy.
I probably sound like a broken record to the forum members, but I was a medical social worker for the last part of my social work career. It’s really important to write down your questions and ask them in your appointment, or if it’s going to be a while before your next appointment ask for a telephone appointment. Telemedicine is appealing to doctors. Doctors can be intimidating or they are so darn nice that you don’t want to waste their time, but your questions are important. If you have bone pain, it’s important for your physician to know about that and to make the appropriate referrals to orthopedics or make sure that you don’t have any lesions.
Dr. Google will take you down a rabbit hole and you’ll be worried about 1 million things that are not relevant to your diagnosis. It’s very comforting to know that other people have MGUS and to hear about their experience, but there is so much variation in the diagnosis and possible symptoms that it’s important for you to stay focused on what your physicians are telling you. Anecdotal information makes us feel not so alone, and there is certainly benefit to that, but try not to take other peoples burdens on as your own.
I’m so glad that you found this forum. I find it very helpful. Let us know how you are and what you find out from your doctor.
Wishing you the very best possible outcome.
Patty

@scnana Welcome to Mayo Clinic Connect! Getting a double diagnosis is certainly not for the faint-hearted, is it?! I don't know anything about thrombocytopenia. Here is what Mayo Clinic has to say about this condition: https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293

Here is a discussion that may or may not be of help to you, here: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/

Everyone's response to MGUS can be different, as @pmm noted. Having a specialist hematologist oncologist on your team is golden! Several of us can experience the same symptoms, but to various degrees. Here is what the International Myeloma Foundation has to say: myeloma.org

Please let us know what questions you might have!
Ginger

Thank you. The hematologist oncologist I saw in December uploaded links to Mayo Clinic, which I read. I wanted to see what others’ experiences were with one or both diagnoses since there are variations in the symptoms listed. I have many questions for the hematologist when I see him later this month.

This is for both you @jeannie215 and @kayabbott . My story is long too and has been written before, but totally agree with what Patty @pmm said above. Absolutely, get an expert, have all the tests for baseline and clear diagnostics = Bone Marrow Biopsy, 24 hour urine, PET scan... I recommend a bone density scan too for monitoring for osteopenia / porosis. I'm 66, was diagnosed on 15 February 2023, have been involved with a whole food plant-based diet study out of Memorial Sloan Kettering in NYC. My last visit, one year mark of study participation will be next month on 13 March.

I too have IgA Kappa Light Chain MGUS. No M-spike. My labs have been stable over the course of this past year. I have a local, highly competent, and responsive hematologist/oncologist, I also meet with a top gun at Dana Farber in Boston, and have my study and expert Provider at MSK.

Of significance is that I came to be a lay-expert due to my dear husband's under diagnosis of MGUS when it was probably already smoldering myeloma. His supposed local expert, before I knew what I know now, did not perform the definitive diagnostics such as BMB, 24 hr urine, nor PET. He only did labs and when the IgA continued to climb he assured us all was well. He was wrong, very, very wrong. Steve died on 24 July 2022 of MM. The lame oncologist incorrectly diagnosed him with MGUS in October 2017.

That's the short story. Seek out a known expert in the field of MGUS/SM/MM; get the appropriate baseline diagnostics; advocate for yourself; learn all you can; breathe; eat well; exercise regularly; keep your weight down; have faith; vacation often. Oh, my guy at Dana Farber told me to "Keep your stress down."

You're in the right place to continue you journey. You are not alone. 🙏💜

@kayabbott @allstaedt57 @pmm

Hi Everyone,

Thank you so much for your replies. I have an amazing doctor at Sloan in Manhattan. Myeloma and plasma disorder specialist. Everyone at Sloan has been amazing. I spoke to him about everything. I did meet with a rheumatologist who does not believe that I have any auto immune conditions. I was surprised bc my mom and brother have many. He sent me for a bilateral hip xray to check for osteoarthritis. I received the results on the portal. Does not indicate OA but I don't understand the medical terminology and he hasn't called me as of yet to discuss. It says- small enthsophytes along bilateral iliac crest margins. Of course I googled the heck out of that but want to hear from the rheumatologist. He also believes that the pain in my hips could be from the increased levels of protein in my blood due to MGUS. I have to run all that by the oncologist a Sloan.. I go next month for a bone marrow biopsy, pet scan and bloodwork. I also wonder (which I guess doesn't really matter) if my MGUS is 9-11 related. I was there the day of and for 5 years after. MM is one of the most common cancers.

I also have not shared any of this with my family bc I feel that there's no point in upsetting or worrying them until I have to. What do you think?

Thank you so much,
Jeannie