Seeking advice: MGUS and osteoporosis with severe bone pain?

That's insane they won't make an appointment for you. If it were me, I'd seek out another doctor for a second opinion.

Get a new doctor

God knows I'm not defending callous or curt physicians - or anyone else, for that matter. But the pain you experience may simply not be due to MGUS, especially joint pain - and ESPECIALLY if you also have osteoporosis. Are you seeing a rheumatologist or endocrinologist for the osteo? Have you asked them about increasing pain?

The oncologist I see regularly starting 2020 is reluctant to offer any advice on other issues - say arthritis pain, or neurothapy - it doesn't have anything to do with your sciatica. He just wants to get my blood counts within normal limits so I won't have to get infusions.

@freespirit60 Let's start with the diagnosis of osteoporosis. Has your primary doctor referred you to an endocrinologist or rheumatologist? If not, I would ask for that, to get a informed decision on how to proceed. Then, make sure that specialist knows you are diagnosed with MGUS before starting any treatment. And also take into account any other health concerns going on right now.

Your hemo/onco doctor is looking at what is his specialty, and may not have the background to adequately address the osteoporosis. I wouldn't expect him to. But I sure hope he would work with your rheumatologist to make sure it's a team effort in dealing with your own unique situation, for treatment. In my experience, I expect and demand my team of primary care plus various specialists to work together for my best health. I was recently diagnosed with osteoporosis, like you, and will be addressing the best way to proceed at my next appointment in mid-January, since I am under treatment for multiple myeloma and also do dialysis for my kidneys.

I'd really like to hear that your primary will refer you out. Will you let me know when that happens?
Ginger

@freespirit60 it is frustrating when what is convenient is one stop healthcare, but specialty docs try to stay in their lane. My hematologist/oncologist will actually say, “I don’t like your triglyceride levels but that is between you and your PCP.”
Well why did you include that in your lab orders?
After 15 years working as a medical social worker, I have learned that although physicians have training as a generalist, many specialize and are mostly prepared to restrict their practice to that specialty. They rely on your PCP to refer to the appropriate specialist if it’s something they can’t treat themselves. Some insurance won’t approve payment for treatment outside of their specialty and some don’t even accept a referral from your specialist to another specialist and insist that those referrals only come from your PCP.
Drives me crazy.
Ask the questions. “Is my pain something you can treat?”
“If you can’t treat me, can you refer me to someone who can?”
“If you can’t, why not?”
Does any of this make sense? Well, short answer is YES. You want the person with the most experience with the very best training handling your specialized healthcare. You don’t call a plumber to fix a light socket malfunction. You really do want the oncologist who has done years of residency and fellowship in oncology and studied in a world class oncology clinic or hospital monitoring and treating your possibly life-threatening condition. Yeah! I’ll take that doc!
Do ask your questions and advocate for yourself and your healthcare needs. It may feel awkward but your physician really does want to provide the best care for you but doesn’t know what you require.
Does this make sense?

@wesleym

@wesleym Yes, I am seeing an Endocrinologist. I get Prolia shots every 6 months.

@gingerw Thank you Ginger. Yes, my Primary Care is the best that have ever happened to me. She referred me to Endocrinologist immediately when I was diagnosed in 2021. My Endocrinologist is a very good and caring provider too. She started me on Prolia in 2024. I have a follow up appointment with her in February.

@pmm Thank you! My Primary Care is the best. I am scheduling an appointment with her to see her soon, and I am sure she will nudge on someone to do their due diligence on me. I am a Family Nurse Practitioner and also Psychiatric Mental Health NP. I do not want to intrude on any Specialist lane to tell them what to do. I respect their specialties. I have always received great care with any specialist I see, except the HemOnc group. My PCM switched me to another group, however, it was worse. All three visits, I never saw the Doctor, only a PA whom I had to correct his assumptions regarding my health condition all the time I saw him. When I requested to see the doctor, they told me she is fully booked for 9 months. My PCM and I decided that I return to this one who diagnosed me in 2019. So, I have been with him now and they insist on seeing me once a year. The whole HemOnc centers in town here are aligned in the same company.
Keep me in prayers please. I am using my little knowledge of being a FNP to dig deeper all the time.
For the fact that my father died died of MM scares me 😥. I am also a single parent to my children 😢. I want to be here for them.