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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)

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@remainanonymous

Hi all. Three questions as a newly-found MGUS IGA lambda 52-year-old, thus far assessed as intermediate-low risk per Mayo criteria (still need to finish imaging). I'm in New Mexico, where a lot of folk I know go out-of-state for specialty care or end up moving. (There are about 8 neurologists in New Mexico on my minimal state insurance, and over a year wait for each).

1) Is there a significant radiation risk of a PET-CT versus MRI? I had a "few small vague lucencies which may represent venous lakes although lesions cannot be excluded" on my skull, but no other findings in the full-body skeletal survey. My hem-onc recommended PET/CT, but only after it sounded like they wanted me to decide.

2) Since we don't have neurologists, would a PET/CT and/or an MRI help my hem/onc detect any non-MGUS illnesses that may be causing my constant severe electric shock sensations, like MS? If so, I'd lean towards one over the other. (My nerve conduction and EMG are normal).

3) I'm going to splurge on an out-of-pocket, out of state specialist consultation for my neuropathy/neuralgia. Would a MM specialist know how to recommend assessment for the neuropathy/neuralgia, or should I rather consult with a neurologist who specializes in neuropathy and knows a bit about MGUS?

Thank you for your help and guidance. I won't interpret anything as medical advice; I'm just shooting into the dark here.

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Replies to "Hi all. Three questions as a newly-found MGUS IGA lambda 52-year-old, thus far assessed as intermediate-low..."

@remainanonymous You pose interesting questions. A PET scan can be thrown off if there are chemical unbalances in your system, not to mention the radioactive factor. An MRI can take quite a while to do, where a CT scan is a few minutes. Whole body MRI has to be done in 4 segments, meaning about 2 hours, where a whole-body CT is about 5 minutes or so. A CT scan is better for showing bone and joint issues, blood clots, and some organ injuries, while an MRI is better for inflammation, torn ligaments, nerve and spinal problems, and soft tissues.

To answer questions #2 and 3, you probably should speak to your doctor and get their input.
Ginger