Seeking advice: MGUS and osteoporosis with severe bone pain?

Have you talked to your family dr. Perhaps he/she woudl be willing to advocate for you or could explain what is going on.

Hello friend ! You really need to get a new doctor for you MGUS
WHAT KIND OF DOCTOR, knowing you have a rare disease, what kind of doctor refuses to see you except ones a year!! That is ridiculous 👽the
SOB IS IRRESPONSIBLE AND CARELESS!! Don’t waste your time and energy on practice who just don’t give a damn about their patience!! Look up on internet, cancer ♋️ centers
Blood disorders centers ! Get an appointment as soon as you can
Ask the new treatment provider
To request your medical records from the useless doctor
Friend ! You do not have to suffer this type of mistreatment!! There are many good and caring doctors and nurses who will help you!
I do not recall if you said you have a good primary care!!
Ask them to help you to get in to see a good doctor!!
Every one , on this forum, is in your corner! We are pulling for you ! We know how it feels to be very sick and needing medical attention!!
Good luck !! GOD S HELP FOR YOU ! Hanya

Janna, thank you very much for your encouragement and support. If anyone in this group knows any physician in this field in Austin Texas who would take care of me please let me know. I will be calling my Primary Care tomorrow and schedule appointment with her.
Hopefully, I will get referred to someone who cares.

@jwbs, normally non-cancer related symptoms are not managed by oncology. If your symptoms, like neuropathy perhaps, are cancer treatment related, you could ask to meet with a symptom-management oncology nurse or palliative care nurse.

Does your cancer care coordinate with your PCP and vice versa? Do you see a rheumatologist for arthritis pain?

Maybe look for a new hematologist? What kind of testing has been done? Marrow biopsy? PET scan, to look for bone lesions? I'm having all this done, and I've only been diagnosed with SMM. Better safe than sorry.

@freespirit60 so many “ologists” it’s hard to know what to ask for. They are all so narrowly specialized that they can appear to be uncaring, but I believe they are just trying to stay in their specialty lane. If the symptoms don’t fall into their specialty, I do wish that they would help us find the right physician.
Failing that, your PCP is the one to help narrow the focus.
My neuropathy is monitored and treated by a neurologist. I have sharp pain frequently in my feet. My hem/onc doc orders scans (CT or PET) every six months to ensure that I don’t have bone issues related to my MGUS.
We must advocate for ourselves in any medical setting. If you don’t get the answers you seek, ask for a phone conference with your doctor if you can’t get an appointment. Every hospital or big medical practice has someone to complain to. Ask who that is and speak to them.
Write your questions down. Take someone with you to your appointment. (when you are upset or anxious, it is easy to forget what it is that you’re being told. I always take someone with me who often have a much more accurate read of what was said in my appointment.)
I’m so sorry that you’re feeling isolated and without support from your medical team. Will you let me know how this goes for you?

@colleenyoung No, I don’t see a rheumatologist. I have appointment with my PCP on the 20th. I will ask her.
Thanks!

@pmm Thanks so much! I sure will let you know. May God help us all.