MGUS and pain

@sunsetchris
It seems as though your situation may be similar to @sheryl71 in that you could use some physician advocacy to narrow down the source of your pain. My PCP defers bone pain issues to my Hematologist/oncologist. He’s the orderer of bone scans. The specialist who did your hip repair might be a good resource for you to figure out the back pain. Back pain is awful. Don’t let them put you off.
Doctors are all busy guys and gals and as well meaning as they are, if the answer isn’t an easy one, you have to be the squeaky wheel. I am always nice about it but relentless until I get the information I seek.
If I have to I ask them to please give me a referral for a second opinion. Again, I ask nicely so they don’t refer me to the doc they found the most obnoxious in med school!
I’d love to know how this works out for both of you if you are comfortable sharing.
Patty

Great approach!

Hi Patty.
I was also diagnosed with Mgus and everything I have read shows curcumin to be the most effective in stopping progression. I have been studying natural herbs for a while now and will update as soon as I learn more myself. I hope this helps you and also encourages you to adopt a plant-based diet with no added sugar.
Best to you,
Paula

What is Mgus?

@pcasey thank you so much, Paula. There are some studies churning around out there and anecdotal support for both. I worry that some valuable research will languish due to funding cuts. So far, I am happy with my curcumin experiment.

@sharongkinney1117 MGUS is short for Monoclonal Gammopathy of Undetermined Significance.
It is a condition where abnormally high M proteins are produced in the blood. Not a cancer, it is often defined as a precursor to Smoldering Multiply Myeloma.

Do you have this diagnosis?
Ginger

Thanks for clarifying this. So many different diseases.

I was diagnosed with MGUS this year after breaking my elbow in 3 places from a simple fall. However, my years of anemia, respiratory infections, kidney and UTI infections have caused me to think that I have more than MGUS. I am stage 3 chronic kidney disease. I have very elevated B12 although I am vegan & don’t use supplements. I was diagnosed with osteopenia and my hip and back causes me a lot of pain. My bone marrow biopsy shows 8% plasma cells and not the 10% needed to have MM diagnosis. I have IGG Kappa Light chain that is elevated since the discovery of the M protein in my blood work. My oncologist/hematologist shrugged my BMB off since it didn’t have the 10%. The pathology reported that there are a lot of abnormal issues that should be figured out, but he could care less. This is so frustrating.

I am new here, so I am trying to find a community.

@dev1970
First let me welcome you to our Blood Cancers and Disorders Community. We have ebb and flow in our posts and it seems that folks are busy with life the past few weeks and thus the posting has slowed somewhat in our MGUS group, but tomorrow may bring a flurry of posts.
I am so sorry that your Hem/Onc physician seems disinterested in the challenge of connecting the dots and giving you the answers you seek. It is so demoralizing to feel that you are out there on your own.
So many of us have been there.
Has your nephrology team made any connection between your kidney disease and that pesky M paraprotein that we have with MGUS? There may be none but that would be something I would be very curious about since there is sometimes that connection.
Regardless, you need answers.
Where are you receiving your care now? I have all my subspecialty care set up at a large university hospital although I got impatient, waiting for an appointment with their multiple myeloma service and went to a local cancer treatment facility. My numbers are low, relatively speaking and I don’t have a lot of symptoms with my MGUS except for pain in my feet. I do have neuropathy in my feet as well. It’s interesting how the soft tissue and bones evidently don’t communicate with one another as I would prefer if I’m going to lose feeling in my feet, my bones would cooperate. That bone pain is no joke.
I see my hem/onc physician every six months. He draws blood and once a year I get a full body CT. We have talked about bone marrow biopsies, but I have opted not to do that (with his approval) because my numbers remain both low and steady. If they start to elevate, I will definitely agree to a bone marrow biopsy.
If my numbers became elevated, I would want to make sure that I have chosen a physician who treats multiple myeloma every day. We don’t have multiple myeloma yet and we may never have it, but I want someone with experience so he or she will recognize and treat those aspects of the blood disorder that are treatable. As with most disease, early intervention is critical.
I want a physician who listens to me. If that respect for patients is absent then I would keep looking for a better fit. In areas of our country where medical resources are scarce, that would mean having to drive or even fly to get medical care. We have many members who journey great distances to be treated at the Mayo Clinic that is closest to their home. For me that would be a great distance but if my MGUS would advance to multiple myeloma, I would definitely go to Mayo, at least for assessment and to develop a workable treatment plan as primary, or as a second opinion. I feel that my life is definitely worth it.
Advocating for yourself in the medical care system is an onerous task. Physicians can be intimidating, but we need to stick up for ourselves and advocate for what we need from them. I write down my questions before my appointment and take them with me. There’s something about that page full of questions that lets my doctor know that I’m not leaving until I get the answers I need. I rarely have to confront, but I will if necessary. I use humor sometimes as a way to get my point across but other times I have to be very direct. I take someone with me because often I am already thinking about my next question before they have finished answering my first. That way I can verify with my person if my recollection is on point. I also ask, “why” a lot. I want to know what the data is. I have asked for copies of papers that are referenced so that I can read them later.
It’s a fine line, sometimes between forcing a bridge to be built between us and blowing it up. I am always courteous, but persistent.
I’m so glad that you found us.
Would you mind sharing with me a little more about where you receive your treatment… A large university system or a small clinic? What do feel that you need from your physician that would improve your professional relationship?