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

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. 🙏💜

Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at Emory, dropped down to Smoldering in 2020, now being told its MGUS. I'm so confused, as I'm going backwards, is that a thing? Who knows. Have had no treatment or meds, but my pain is debilitating on some days, and Dr.s act like I'm lying. All this pain is what took me to the doctor back 10 years ago !! Anyone else going through this, or is it just me?

I was diagnosed with
MGUS 7 years ago and
after l did some research l became afraid to follow up in a year as my Oncologist requested. Now I’m having severe pain in my entire body including my hips. I have had Transverse Myelitis for 23 years, and I would just attribute the increase in pain to that disease. But in the past several months I have noticed abnormal labs with a decrease in various blood cells. Now I’m really afraid to go back to the Oncologist. Will l need another bone marrow biopsy? What will they find?

Hello, I was recently diagnosed with MGUS. I have had a series of curious, unfortunate events since August 1st (Now Feb. 20th). I woke up from a nap with severe vertigo. After three days, I completely lost my hearing in one ear. Specialists called it an idiopathetic, neurosensory hearing loss. That was a mouthful, but compared to saying what MGUS stands for, simple enough. Since then, I have had COVID-19, the flu, and a torn rotator cuff. I was convinced my immune system must be shot to hell and visited my M.D. who suspected MGUS. Of course, after the initial fear of MM, MGUS seemed like a runny nose. Since then, I have researched as much as possible and found that hearing loss is associated with MGUS as well as the overwhelming fatigue I experience every day in the late afternoon. (Now I have an excellent excuse to nap! Has anyone else had similar experiences? My oncologist feels that the "mystery" virus that caused my hearing loss could've triggered the MGUS. Any thoughts?

I have myeloma. I have hip pain, but I do not have any bone lesions from myeloma. So the myeloma is not causing my hip pain.

Recently I had an MRI. My spine is a bit curved to the right. I am going to get a PT referral. In the meantime, I am doing exercises from the web to strengthen my core and spine, such as planks, wall sitting, downward dog, pose of a child, walking on a treadmill and so on. The pain in my hip is almost gone.

Sometimes I think my back and hip pains are also related to stress.

There is a researcher at Memorial Sloan Kettering who is studying how diet and weight loss might slow the progression of myeloma. Her name is Dr. Urvi Shah.

https://www.myeloma.org/videos/living-well-myeloma-can-nutrition-improve-quality-life-outcomes-myeloma
.
https://healthtree.org/myeloma/community/articles/best-diet-for-precursor-myeloma-ash-2023

When I had MGUS, I wish I had known to avoid added sugars, eat protein fro beans, tofu and tempeh, eat 30 different foods from plants each week, and add turmeric to my food at each meal.

I currently doing the ZOE program! I have MGUS and other inflammatory processes. My 3 test results are in and I am learning how to eat to boost my gut microbiome. Test shows poor. I have better than average fat control compared to my peers. I have poor sugar control. My dangerous belly fat is shrinking. I add turmeric and ginger to many meals like you! And I am adding other spices to most meals. I love how everything is geared to each persons biology! To health aczatx!😁✌️🌷

I was diagnosed with osteoarthritis in my left hip and had total hip replacement surgery in 2018. Now I have been diagnosed with severe osteoarthritis in the right hip and am contemplating having it replaced. However, when I had my left hip replaced, it left me with chronic pain radiating down my entire left leg from the pelvis to the ankle. Never has this been diagnosed definitively. Some say a nerve root was damaged during the surgery. Others say that the THR changed the axial forces in my spine which worsened my scoliosis and is the cause of my neuropathy. I was diagnosed with MGUS in 2021, and now I wonder if the hip pain, back pain, and neuropathy stem entirely from the MGUS. No doctor has ever said this might be the case. But since I've not had an actual diagnosis for the left leg pain, it makes me wonder. My right hip hurts when I rotate the right hip as you do when you do a tree pose in yoga, with the knee bent and rotated to the right. It also hurts sporadically when I pivot on my right foot. I also have SI pain on both the right and left sides, although I do not have arthritis in the SI joints. The SI pain is worse at night. It is sharp, achy, and worse when I forward bend. It also hurts when I lie on my back and raise my hips. I do think that the SI pain stems from the pain in my hips. I exercise, stretch, use TENS, have a chiropractor, use topicals (which do not help very much), apply heat, a massage gun, and have massages occasionally to manage the pain. Now and then I take acetaminophen, but I cannot take NSAID's. I do take Cymbalta, which I believe helps. I haven't tried muscle relaxers. I suppose if I have trouble sleeping I might try a muscle relaxer but I am nervous about becoming addicted. I am lucky that sleeping has so far not been a problem. I am 70 years old, very thin, and also have osteoporosis, for which I take infusions of Reclast annually. It seems to be reducing mass density loss. Good luck to you with your hip pain.