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?