Does anyone else have MGUS?

Google: "Does Curcumin slow the progression of MUGUS."
Harty

I too was diagnosed with OP in 2022. My endocrinologist order SPEP and I was diagnosed with MGUS.
My cousin had spontaneous lumbar fracture. Diagnosed with severe OP- and not MGUS or MM. So I think vertebral fractures due not necessarily mean MGUS or MM.
Patience which is hard at this time.
Hope this helps.

I am 70 years old and I've just been diagnosed with MGUS last October (Oct. 2024). I would like to know if any one dieted or increased exercising to help combat any symptoms, if any. I understand the majority of individuals have no symptoms and can live normal lives. Please enlighten me on how MGUS has affected you.

Oh dear. I have diagnosed MGUS and severe osteoporosis of the spine. I’ve been in pain for a little over a month. The pain is the back of my neck up into my hair line and runs a bit across both shoulders. I wonder if I have broken something…

@shescomeundone
welcome to the blood disorder discussion group. I remember when I was diagnosed with MGUS about three and a half years ago. I certainly felt as though I had come undone as well. The more I read online, the worse my apprehension. As Ginger said in her previous post, MGUS is considered a benign blood disorder, but some of us are overachievers and have symptoms. Some are overachievers and there is progression to Smoldering Multiple Myeloma or Multiple Myeloma. The risk of progression is, however, very rare.
Dots have been connected between MGUS and osteoporosis. The literature refers to what are called "fragility fractures."
https://pmc.ncbi.nlm.nih.gov/articles/PMC4268401/
Most of us with MGUS get bone scans on a regular basis to ensure that we don't have lesions that would be a cause for concern.
I have osteoporosis as well. I have a spot on my C2 which has been identified as osteoporosis. Otherwise, I have not had any fractures or other cause for concern associated with MGUS. My blood analysis that's done every six months is currently almost exactly the same as it was when I first saw my hematologist/oncologist 3 1/2 years ago. I have learned to relax and not attribute every transient pain or illness to progression to multiple myeloma. Chances are I'll die of something totally unrelated.
It'ss important to have a hematologist/oncologist with whom you have a great deal of confidence. I'm sure your PCP is excellent but this is a complicated blood disorder and you want to get someone who really knows his or her stuff. The reason that we look for someone who is experienced in treating multiple myeloma is that this person will have good understanding of the progression from MGUS to Smoldering or full-blown multiple myeloma.
The other thing that makes me feel at peace is every time I go see my hem/onc doc, as I leave, he reminds me that right now I am fine and in the unlikely event that my condition progresses to multiple myeloma it is very treatable.
I don't want to minimize your feelings because when you are first diagnosed it is scary. We have all been there. When you have your follow up appointment from all the testing that is being done, take your list of questions in to your physician and make sure that all your questions are answered. It's important that your doctor takes the time to go over your test results and ease your fears.
I will be thinking about you. Will you let me know how this goes for you and what they find out about your fracture?

@dducote
ouch! Have they done any bone scans for you recently? You might call your hem/onc doc and see if you can get some scheduled.
I'm sorry you're having this pain. How long ago did it start?

@franciscomacias
Hello! there are several discussion threads on diet and MGUS. Here is one.
https://connect.mayoclinic.org/discussion/plant-based-eating-to-lower-the-chance-of-mgus-progressing-to-myeloma/
I personally have not changed my diet. Some have tried various diets with some success and there are some studies. I have tried curcumin as a supplement to my diet and my numbers have stabilized and are at the same level that they were 3 1/2 years ago. Whether or not that is because of the curcumin I can't say. I retired during that time and my stress levels are definitely lower!
What have you tried that you may feel has been successful?

I was diagnosed with IgA MGUS WHEN I WAS 52. I’m now 61. The typical age for this diagnosis is 70+. So yes, another over-achiever! I had back pain which was diagnosed as pars fractures, also known as spondylolysis. It is a stress fracture on the lumbar spine. That led to bloodwork which resulted in the MGUS diagnosis.

Yes, we “MGUSers” are on the radar, but other symptoms and conditions can happen before we (hopefully never) get to the SMM or MM diagnosis. I see an oncologist/hematologist. It’s NOT enough to just have a primary care doctor. You need to be monitored by a blood specialist. I started out with a bone marrow biopsy to get a baseline reading; had that in August 2016. After that, I was seeing my oncologist twice annually. Well, things started going sideways in 2022. I was feeling incredibly fatigued; heavy breathing, limbs felt like 100 pound weights were attached, excessive sleeping (I felt drugged up) and couldn’t walk more than a few feet without feeling like my heart was pumping out of my chest. Oh, and the strangest of all things, craving dirt! Yes, DIRT! After feeling that way for a couple of days, went to ER and was hospitalized, I needed two blood transfusions. Long story short, I now have both acute and chronic iron deficient anemia, which requires blood transfusions and iron infusions every few months. That explains the pica cravings. My body was telling me what I needed - iron. I’ve also developed Dyshidrotic eczema. My hands blistered over and over for months and the itching could NOT be relieved. I even slept with ice bags on my hands because it was absolutely DEEP, unbearable itching. They would peel so deep that I had bleeding and painful fissures. I finally saw a dermatologist and was prescribed topical steroids & Opzelura (Opzelura is an absolute godsend.) If you read some of the MGUS conditions, this is all listed. The iron deficiency has also caused my fingernails to raise and fall off at different intervals. Still searching for the cause of the blood loss (more tests Monday!) I’m only mentioning these items because you don’t want to ignore treatment for any of them. Just stay vigilant if anything seems off so you aren’t in the emergency room! Hope this helps a bit.

@lisamichelleely Welcome to Mayo Clinic Connect. And, thank you for sharing your story and experience! It's important to show the rest of us members, that everyone is unique and our journey can be similar to someone else, yet have differences.

I've said it before, in different conversations, that our bodies are such complex machines!
Ginger

@franciscomacias Welcome to Mayo Clinic Connect.

Many of us have no overt symptoms. How I dealt with MGUS was to make sure I kept to a healthy and appropriate diet for me, get good moderate exercise, and keep stress levels down. MGUS was not my only health concern, and a lot of others here are the same.

Many of us go through anxiety issues, trying to figure what to do. Please read our discussions here and get some tips for coping. Have you felt you have experienced any symptoms?
Ginger