@sheryl71
I think what they worry about with MGUS is bone lesions. I get CT scans every year to make sure my bone health is holding steady. I have random pain episodically, especially in my feet which they suspect is related to neuropathy which, I am told, is mild.
Pain is so difficult to even describe. When they ask me to rate it on a zero to ten scale I may not have had pain today or perhaps the previous seven days, but tomorrow I’ll hobble around saying “owwwwww!”
It’s a series of rule out testing and you have to advocate for yourself to get to the bottom. Don’t let your doctor make you feel like you are imagining your discomfort. On the very rare occasion that my doctor has dismissed me, I have challenged her thinking. I use humor when I can. “Is your crystal ball on the fritz or should we do more testing.” She may roll her eyes but she will dig deeper.
I often forget which days I suffer and what my symptoms are. I jot them down in notes on my phone. I refer to them in my appointments. I also read about the possible side effects of medication. My PCP is a talented diagnostician and stays up on this but she’s busy. I want to be an active member of my treatment team.
I do hope you find some answers. Please let me know what you find out.
Patty