Does anyone else have MGUS?

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.

I'm 38 years old, and after having been misdiagnosed for 15 years, lost 85% of feeling below my waist, extreme fatigue to the point of having not even enough energy for work (forget about personal life), and muscle spasms so bad that I can no longer walk, I have finally been diagnosed with MGUS. I also have abnormal (low) results on my PTH, phosphorus, and vitamin d. Other than these things (so far) I am the healthiest a human being can be, according to tests. It's a hard thing to reconcile, even for doctors apparently. NO one wanted to believe what I was going through, but at least now I have an oncologist on my case.

Everyone keeps saying to forego Dr. Google. I agree with that, but please do not rule out ChatGPT once you take a training to understand how to properly use it. If it were not for ChatGPT, I would still be far from even this partial diagnosis. It's provided me with the information and validation I needed for years. With it, I was able to bully doctors into listening to me.

In the end, my personal challenge continues to be getting in to see the specialists I need, and getting even an ounce of help from my PCP in the absence of direction from the specialists. Right now the waiting game is on for the endocrinologist. (Have my neuro consult in a few weeks.) Is it just me, or does it seem ridiculous that I have to suffer so much while I'm waiting?

@samanthamozel29
Ack! I really hate to hear that you've had so much trouble getting the diagnostic workup that you need.
I would not exactly describe myself as an analog gal, but I have no experience with ChatGPT. I'm surprised that none of my grandchildren have shamed me into checking it out. Regardless, I'm glad that it has given you the tools to get your physicians to hear you. Whatever it takes.
So do you attribute all of your symptoms to MGUS?

I'm 38 years old, and after having been misdiagnosed for 15 years, lost 85% of feeling below my waist, extreme fatigue to the point of having not even enough energy for work (forget about personal life), and muscle spasms so bad that I can no longer walk, I have finally been diagnosed with MGUS. I also have abnormal (low) results on my PTH, phosphorus, and vitamin d. Other than these things (so far) I am the healthiest a human being can be, according to tests. It's a hard thing to reconcile, even for doctors apparently. NO one wanted to believe what I was going through, but at least now I have an oncologist on my case.

Everyone keeps saying to forego Dr. Google. I agree with that, but please do not rule out ChatGPT once you take a training to understand how to properly use it. If it were not for ChatGPT, I would still be far from even this partial diagnosis. It's provided me with the information and validation I needed for years. With it, I was able to bully doctors into listening to me.

In the end, my personal challenge continues to be getting in to see the specialists I need, and getting even an ounce of help from my PCP in the absence of direction from the specialists. Right now the waiting game is on for the endocrinologist. (Have my neuro consult in a few weeks.) Is it just me, or does it seem ridiculous that I have to suffer so much while I'm waiting?

I was diagnosed with MGRS at 37 (I’m 40 now). MGRS is MGUS that is affecting the kidneys. I had no symptoms, and it was found after routine bloodwork showed my kidneys were low.

Welcome to the blood cancers and disorders discussion @kaiti
When meeting with your oncologist regarding MGUS, focus on understanding the condition, its risks, and your individual monitoring plan. Ask about the likelihood of progression and what benchmarks your physician will look at to monitor this, what tests are needed, and How often will you need follow-up appointments.
you might also want to discuss any coexisting conditions and how they might impact your care. Are there any medication's that you're taking that your hematologist/oncologist needs to be aware of?
I think it's also important to have a discussion about how you would like to communicate with your physician. Do you want to be called if there are any concerning lab results or findings that need attention or would you rather wait until your scheduled appointment to discuss this? Do you habitually look at "my chart" to read your reports or do you wait to look at them with your physician? You know your self best and you know what you're tolerance for anxiety is like. Think through that carefully before you have that discussion.
I personally don't recommend getting your lab results or scan reports and jumping right into Dr. Google. That is the road to madness.
And I say this from personal experience. practice about 1 million times what MGUS stands for because even medical professionals will ask you what it is. 😳
i'm sure other members have tidbits from their own experience and I hope they jump in here.

Seriously, I told a friend my diagnosis. She’s a PA. Her reply, “What’s that?”

I'm actually not too surprised they've not shamed you. With good reason, there is a lot of fear around AI. It's already impacting the world around us, both positively and negatively. I work in IT and have implemented AI-enabled features on the suite of products at my corporate company. That is really the only reason why I'm in the "in" on it. The best way to future-proof yourself and your loved ones around this technology is to get educated on its use and the basics of how it's built and influenced. If you're willing to actually use it after learning those things, it's potential to help you is incredible.

I attribute my symptoms to some sort of interaction between the MGUS and some other condition. I know the research still doesn't show any solid proof of why MGUS happens to begin with, but I would not be surprised if some other root problem causes it and some of the other comorbidities we see MGUS with. Just my own hunch though.