@lbhayes
Welcome to the Mayo Clinic Connect.
It certainly a chicken or egg situation to contemplate. There is a MGRS. I suspect the renal significance is when they can connect the dots between the M paraprotein and renal decline. I will post some information about it for you. It’s not easily available to me at this moment but I can remedy that in a few minutes.
Generally speaking, the hematologist/oncologist will do a whole body scan to look for bone lesions on a regular basis. If you have questions about bone pain or you are worried about progression, I would talk to your physician and certainly not wait for a year. I don’t know about you, but I always forget my questions when I go to see my doctor. I have begun to write them down in a notebook that I carry with me when I go for my doctors appointments.
If you feel dissatisfied with your medical care, you can always get a second opinion. This is a complicated blood disorder and you’re right to ask all your questions and ensure that your physician is able to connect all the dots between your symptoms and their etiology.
I’m sure some of your questions will be answered when you see your nephrologist.
Many of us have coexisting conditions that don’t have anything to do with MGUS. But the MGUS can certainly complicate things and the connection, or lack there of, has to be ruled out.
I have learned how to advocate for my health care. I have learned to be the squeaky wheel, but not alienate my treatment team. I look at my PCP and those specialist that I see as partners with me in deciding what is right for me treatment wise. I listen to them carefully, I ask lots of questions and I do my own research if it’s something I’m concerned about.
It’s also really nice to be connected through this forum as there are many people here who have already gone down the path that I am traveling and have good practical counsel for me. I was diagnosed with MGUS only three years ago and there are people “here” who have been living with MGUS successfully for well over a decade.
I’m really glad you found us. Do you feel comfortable in calling your doctor and asking for a telehealth appointment or a phone call so you can ask all your questions? If so, would you let me know how that goes for you? I’d also like to know what your nephrologist has to say if you’re comfortable with sharing that information.