Does anyone else have MGUS?

@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?

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…

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.

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.

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

Hello everyone, I'm a 49 yo f and was diagnosed with MGUS in April 2023. In April 2024 the light-chain ratio was within normal range. Last 6 months I've been suffering with neck pain and a specific painful spot on my spine. I just chalked it up to how I carry stress & my job. This week new pain in shoulder and shooting down my right arm, thought I should go to the Dr. He ordered xrays and I found out yesterday I have a "severe compression fracture on T6" plus some degenerate disc disease, osteophytes...basically arthritis (which is what my dr was looking for) causing a pinched nerve. He was shocked by the xray results. He ordered blood tests including light-chain and I had those done today. Saw my family dr today and she said I have osteoporosis caused by MGUS. She ordered a bone mineral density test which is booked for Wednesday. Do I need to be concerned about MM?

Ginger, thank you so much for sharing your story. I hope and pray that your health stabilizes and does not continue to morph. It is very kind and generous of you to share and mentor those of us coming along new to this. God bless you and be well.kleo

@4kleo Here is a link to the page that speaks about MGUS, from myeloma.org: https://www.myeloma.org/what-are-mgus-smm-mm

As you can see, there is a lot of information there for everyone to digest. I will tell you my story, that I was diagnosed in 2017 with MGUS, that morphed to smoldering myeloma in 2018, and upgraded to multiple myeloma in 2019. My specialists will be the first to tell you that is highly unusual, and we joke that I am an "overachiever". I also live with an ultra rare kidney disease, fewer than 50 people in the world have been diagnosed with it.

MGUS is often found when our medical team may be looking at another different health concern.

Yes, our minds wander a lot. We get to become aware of how to quiet the niggling thoughts, the apprehension, the "what ifs" that come along with the wait-and-see approach to the MGUS condition. Remember, the vast majority of people do not progress beyond MGUS.
Ginger

Ginger, I’m a little confused if MGUS is benign why would we research on myeloma site for information I was diagnosed in November and I’m in the “wait and see” . You’re right , I hate it. Going in April for new CT and bloodwork. I eat very healthy. I exercise by walking every day and drink a gallon of water. I don’t know what else I can do. Maybe supplements I heard curcumin could help but I’m not sure who to ask about that. I keep trying to focus on the fact that it’s a one percent per year so I am 99% to the good. Next year I’ll be 98%. That’s the way I see it, but it doesn’t stop my mind from wandering.Kleo

@dianelouchart65 Welcome to Mayo Clinic Connect! Yes, it will often take several different tests to determine exactly what is going on with us. It's nice to be able to have accuracy, and get to understand our situation. As you will see here, MGUS is considered a benign condition, and the vast majority of people do not progress further. The "watch and wait" approach is considered standard protocol, although as patients we might find it frustrating!

myeloma.org is the website for the International Myeloma Foundation, and has a ton of educational material there for you. Healthy diet, reducing stress, moderate exercise will go a long way not only helping you feel better about yourself, but give you a chance to focus on being the healthiest you can work towards.
Ginger