MGUS monitoring: What tests do you have done regularly?

high CALCIUM
RENAL/kidney problems or disease
ANEMIA
BONE pain or lesions/osteopenia

I was recently diagnosed with MGUS (IgG lambda) while being tested for other things. After having a lumbar puncture, my CSF IgG came back as low. I’m concerned that the two may be connected or that the low IgG may trigger the MGUS to progress. I live in a fairly rural area where no one seems to understand this very well. Should I be worried?

Did they do a bone marrow biopsy? That would be in pelvic bone.
I googled you test and says they look for low numbers. Check back with your doctor who ordered test? Prayers all goes well.

I had a bone marrow in the original diagnostic testing. The MD is a well known specialist in the disease. He explained it was a benchmark to see if the MGUS had harmed or invaded the Bone Marrow. But I do not expect a bone marrow every year, unless the M spike or other less invasive tests show elevation and the M spike gets higher and more pronounced. Right now my M spike is in the process of hiding from my primary. My MGUS/Myeloma specialist says do not be fooled. Even if it is not showing in the blood work it is always there once it shows up. I haven't seen the MGUS/myeloma specialist in almost 8 months so we will see what he says in January.

The rural area is concerning. Perhaps at least once or twice a year you can travel to a major center that treats bone cancers. I live in a very well qualified physician area and I do travel over an hour to see the MGUS/Myeloma MD, twice a year. He is the one I depend on for analysis and answers to the MGUS as my primary tells me very different information. The specialist has done a fellowship in the MGUS/Myeloma disease and works at a cancer hospital. They are way more qualified than the local GP in this disease. IT is an uncommon cancer and not many local doctors are familiar with this disease. I love my primary but she knows next to nothing about this disease. See a specialist.

I discovered I had MGUS through other testing that was done looking for a root cause of a back issue. I met with a hematologist and after the blood tests, he said just watch and wait and come back in a year. It turned out that my insurance at the time didn’t cover about $2k of the labs that the hematologist ran due to the charges the hospital lab charged.

As I was scheduling the next appointment. The hematologist asked that I start seeing him every six months. I let him know that pay $2k out of pocket every six months for labs was going to be vey difficult for me to afford. He came up with a plan for my PCP to run the key blood labs and provided him with instructions that if I crossed over key indicators in the test results, I needed to return to see the hematologist. For some reason, the insurance company paid for these labs even though they were the same labs the hospital ran. I went for ten years having my pcp doing the testing.

Then one of the indicators crossed that threshold. Back to the hematologist and in addition to the labs, he also order my first biopsy. At that time, I discovered I had Smoldering Myeloma. I was still in a watch and wait, but seeing the hematologist quarterly. The good news was that I was with a different insurance company and they paid for everything.

Two years later more indicators were rising and time for another biopsy. This time in addition to the Smoldering Myeloma, which wasn’t progressing, I found out that I also had CMML-1.

I had moved to Phoenix during all this. I started going to the Mayo Phoenix in September. I start the transplant process on Friday.