MGUS Symptoms: What symptoms did you experience?

Hi @marshaberi, Welcome to Connect. The condition of MGUS can change over time. So it is a good idea to have a followup with your oncologist. Please don’t let your fear of the unknown prevent you from seeing your doctor. This can be a treatable condition but to do so, you need to be seen and have a clear diagnosis.

You mentioned that you’ve had labs in the past several months with a decrease in various blood cells. Are these tests being ordered through your primary care doctor? Is this doctor not concerned with the change in your labs?

@allstaedt57 that must be disheartening to feel as though your husband was misdiagnosed. It makes so much difference to have physicians you trust to monitor and treat your conditions.
When I was working in a Children’s hospital through the height of COVID, I was worried about being immunocompromised so I did a deep dive in the research. I also wondered about any connection between autoimmune disorders and MGUS. This study affirmed what my hem/onc told me but he was new to me still. He said that MGUS was not in itself an autoimmune disorder and there is no evidence to suggest that autoimmune disorders make one more susceptible to MGUS. I have Celiac as well and I wondered if there might be a connection.
https://www.myeloma.org/videos/autoimmune-diseases-are-not-associated-mgus-results-population-based-istopmm#:~:text=Monoclonal%20gammopathy%20of%20undetermined%20significance%20(MGUS)%20is%20a%20precursor%20of,among%20patients%20with%20autoimmune%20diseases.
You are certainly correct that it is different for everybody. It’s amazing to me how differently we all experience this blood disorder. I hope you have a good hematologist/oncologist who you can trust who has a lot of experience treating multiple myeloma. We all hope that our MGUS does not progress, and the statistics are on our side, but it’s like going to the grocery store ahead of a blizzard… Good planning!
Patty

Thank you Patty. Yes, I believe I now have an excellent local hematologist/oncologist as well as the one watching after me in Boston and the a third for the study I'm involved in regarding whole-food, plant based diet. So, I am not short of Top Guns of MM. We all just hope for the best don't we. On this road together. 🙏💜

Yes.
Dealing with lame drs now as I search for a new specialist (care follow ups-no meds or treatments-screeched to a halt during covid and my hematologist retired) who seem to assume that my case is asymptomatic since MGUS means “nothing” compared to “REAL” malignancy.
It’s frustrating.
I feel as though my questions turn me into a hypochondriac in their eyes.
Humiliating appts.

I truly truly believe deep within that instinctive intuition that many of my complicated medical issues MAY be related to MGUS (even though mine is IGg kappa light chain = COMMON and considered “non significant.”
(Don’t you dislike the term MGUS? It irritates me.)

My apologies; this is more of a rant than anything very helpful.

But I think:
If the blood plasma chemistry has been altered by the abnormal proteins, WHY WOULDN’T this create problems?

We simply don’t know enough yet.
I think there is a lot remaining to be discovered and realized.

Wishing you all well with blessings across cyberspace.

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.

Hey. Just got back from my final visit last week with Dr. Urvi Shah's research study on whole-food, plant based diet. Looks like my labs are maintaining within the MGUS range and am awaiting my BMB results. I joined the study based on my long term belief that we can make a difference by what we consume. For all reading, Dr. Shah's study is open for recruiting and while they do not pay for the travel, lodging nor food, if you might be close by or able to participate it is valuable research. I believe they will soon be offering participation at Emory University in Georgia as well. Best wishes to us all.

Sorry, I said they don't pay for the food, if you are randomized to the "Diet group: plant-based meals" you are provided the first 12 weeks of meals and the a few of the other randomization groups you receive the meals from week 16 through 24 or something like that.

They also don’t cover the cost of the full body MRI and BMB that you must get.