Ideally, I'd want a hema that's familiar with the interaction of MGUS with T1DM, also metformin and insulin.
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"diagnosed with MGUS July 2019 at age 19... She was having fatigue, bone and joint pain, low-grade fever, headaches, dizzy spells, shortness of breath, just feeling sick all the time."
Such heavy symptoms were present at diagnosis? Since MGUS is usually symptom-less, I'd want to know why she was different. My guess is the T1DM and/or its meds.
Also:
"We had a pet scan in 2019 which had light up in the tonsils area."
A PET can't distinguish between cancer and inflammation. It sees increased metabolic activity. This PET probably saw only tonsil inflammation.
"nodes... it’s small swelling that comes and goes"
very very unlikely that cancer just goes away, so again that's inflammation and probably related to the tonsils
"They seemed to think it was nothing to worry about"
true. as far as it's not MGUS progressed to *lymphoma*. I don't know if nodes can wax and wane because of accumulations of M proteins.
"Dr blames everything on her being a diabetic but she controlled'
Maybe the doc means: T1DM is autoimmune. People with one autoimmunity are more likely than average to get another. As opposed to meaning high blood glucose is the cause, which she doesn't have anyway.
"3 UTIs with back pains"
Well, that doesn't seem to be caused by low immunity from low WBC -- which is what is meant when you read that MM causes frequent infections. It's more likely that the kidneys getting clogged with M proteins leads to more frequent UTis. Monoclonal gammopathy of renal significance (MGRS)
Murphy, I've seen quite a few of mystery conditions. But I don't know if I've ever seen a case so complicated - because the line between MGUS and malignancies is so very intricate. That's why I'd want the BMB, as a fishing expedition for more clues in your daughter;s case. I'm not the type to say that everybody should get every test all the time.
You can take some comfort for now at least in knowing that progression is much more common in 60+ males. So she doesn't fit the usual profile for progression.
Hi, Murphy. The 1st thing to stand out is that her WBC and platelet numbers are apparently okay. A problem in the bone marrow, whether malignant or not, tends to affect all blood cell lines. That's because normal production gets crowded out. It's possible, but unlikely, that only a single line (RBCs) gets reduced.
However, theoreticals on MGUS progression to MM can go around in circles forever. So yes, you should want more testing.
But I'd 1st want to know if the amount of M proteins and/or Bence Jones protein has increased greatly or not. The levels matter, not merely presence. What about other blood markers for MM?
Since a BMB is much more invasive than blood tests, docs need more justification because of the increased risk. So a hema might be resistant, they vary individually. You can't know without asking. I'd ask them about whether you have that option. Ask on the portal.
Some people are terrified of BMBs, but I've seen it done and it doesn't seem to be a big deal to me.