Thank you for your encouragement, Ginger!
It is wonderful to know you are a survivor of MM! That’s a victory of a lifetime and I wish you well as you move into the future.
I do keep symptom journals and the details have helped physicians diagnose and treat when labs and testing were not providing evidence of disease.
This is such an important habit; patients must do all we can to advocate for our selves. The journal can be difficult to keep when sickness is intense, fevers run high, and exhaustion is reigning. But I find if I jot notes I can usually reconstruct back into the journal well when able.

Honestly, I am spurred on by your story of being an overachiever!
My brilliant neurologist, who recognized the MGUS and has always pushed me to “demand” good care and oversight, recently asked me to request the oversight of a hematologist, after a decade without such a specialist, just testing ordered by my PCP. He has been concerned about the fluctuation of the M spike and explained to me that quite often the numbers go from low to the hundreds in record time, just like you described. He also sights my younger age at Dx and I am sure he has been considering the rheumatological disease impact on monoclonal antibodies that has been seen in more recent research. He thought a hematologist was appropriate for my care because we “need someone who knows the questions to ask and the best additional testing to order.”
After referrals and two dreadful appointments with hematologist oncologists who basically told me everything I already knew about the statistics around asymptomatic MGUS and to add insult to injury told me I had been, in their opinions, over monitored and over tested in the past and would recommend serum protein electrophoresis labs every three years for follow up, I feel discouraged, frustrated, and a bit reluctant to keep advocating for care.

I am sure these doctors are wonderful with their cancer patients and provide excellent care. But they made me feel like an invisible 52 year old hypochondriac. And that’s simply the sad reality. I don’t just keep symptom journals, I take a lot of notes during appointments.
It is exhausting to find the right physicians, especially when it becomes necessary to start over.

I am in search of those who take genuine interest in a complex patient and have a curiosity about what might be happening across systems and creating body wide havoc, so to speak. I also need someone who will listen and look at a complicated history and believe me.
Those are the gems of the medical world and it has been physicians such as these who have helped to save my life multiple times and rescue me when this body was failing and defying me.

Thank you for listening, anyone who has read all the way through this diatribe. This is simply another rough place along the way for me personally.

Bless you.
May you find yourself healing and experiencing positivity and victory over your own illness or that of your loved ones. 🩵