Has anyone done a bone biopsy on you? That's the MOST important test they can do to see exactly where you stand with MM. I am 5, nearly 6 years into this, my MM was discovered completely by mistake on a quarterly blood and urine analysis. My primary quickly sent me off to a Hematologist/Oncologist. A bone biopsy was the first thing they did! My skeletal scans(x rays) have never shown lesions. Still none today. I was MGUS for the first 2 years, but 1/2017 I was MM. They have always done bone biopsy's to see exactly where I stand. My local doctor sent me to be treated at one of the US's top Bone Marrow Clinics in Louisville KY. My doctor there has gone on to do more research into MM rather an being on the clinical side of things. I will miss him.
But I'm changing doctor's anyway as we are moving closer to the KC metro area and will find treatment there (I hope). I will call my specialist out of Louisville for a referral before we move so I at least know where to start.
I've added you to my team. Not that I know what I'm doing I've been a part of this group for a while and am just now venturing beyond the reading phase.

Cobyjb Are you saying you doctor does not have much experience with Myeloma ? If that is the case I would find a different doctor that specializes in MM. I am 5 yrs into this journey. I am sure things have changed a lot since I was first diagnosed in 2015 but my first day I was sent for a series of 25 xrays to look for bone lesion's. From head to toe. I had one tumor on my breast bone and top rib that was visible from the outside. Popped out from one day to the next. Thankfully no others were found. My doctor said then that the xray was the best way to see if I had more. I have had 2 or 3 CT scans since but no MRI. How are your blood counts? It can all be overwhelming but you will learn to go with it. There are many treatments available. God Bless.

I had two bone surveys and two PET CT scans. So you are correct. You do need more imaging for staging. I just got an email from Myeloma Crowd, Saturday they are hosting a webinar: How imaging informs treatment decisions with Dr. Hillengass and Dr. Landgren. 12 pm EDT. This should answer your questions. 😍

He is considered the best knowledge wise at KUMC (KUCC) as far as I can tell and have been told. His new NP is also good from what I have heard. I will meet her this month.

Watched the Chiefs. They just need to get offense a little more in sync and they will be awesome again!!!!

Cobyjb, keep pressing and getting more information till you are satisfied with the answer. So sure seek a specialist in MM. Most people have never heard of it and regular doctors don't have a clue. God Bless!