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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (1026)

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@kaiti

Hi,
I am 50 years old, I recently did a blood test that showed I had Band 1 Monoclonal IgG with lambda light chains 2.3g/L. My GP believes it to be MGUS. I have my first haematology appointment on Thursday. I also have prediabetes, kidney stones and an inflammatory skin condition, hidradenitis supporativa of which I have been on Humira the past 2 years. What should I ask the Haematologist?

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Replies to "Hi, I am 50 years old, I recently did a blood test that showed I had..."

I've got my first hematologist appointment next week, and I intend to ask whether the MGUS may have any impacts on any of the other medical issues I've got going on, or whether any of those issues or their actual/potential treatments might have ramifications for the MGUS.

At this point, I've got a multi-page table tracking my various medical issues: upcoming appointments, notes/questions for the appointments, past appointments, outcomes from past appointments, drugs, side effects of the drugs, actions I've taken to manage the side effects of the drugs, non-traditional stuff I've tried, etc. Really, it's a journal in table format. Because I've given up entirely on being able to hold it all in my head.

The medical community operates in silos -- not their fault, it's just how it is. But the human body/mind is not made up of silos -- it's an integrated whole. Expecting my excellent but overworked PCP to coordinate all that effectively is just absurd. So these days, when I see each physician (let's see -- at the moment, it's seven of them plus, of course, my pharmacist), I try to encourage them to think about the consequences of each diagnosis/treatment on all the other diagnoses/treatments.

I'm 72, I'm living a quite engaged life, and I am not my diagnoses. Since I want to hold onto that as long as possible, doing my best to help my medical providers operate as a team has become one of my priorities. Because it's really hard for them to do that if the patient isn't actively helping.

I recently asked my migraine neurologist to take a quick look at several possible insomnia drugs I planned to discuss with my PCP, and she flagged one that she routinely uses off-label with success as a migraine preventive. You never know what can pop when you try to be somewhat holistic about things.