Olivia, welcome. I read through your post a couple of times, and I was a little overwhelmed, just reading it so I can only imagine how you feel. That’s a lot to deal with. When you have a condition such as MGUS, that is supposed to be benign, yet you have all these symptoms, it is, indeed, disheartening. You understandably wonder if they are related to the MGUS or something else is going on as well.
I have neuropathy in my feet but otherwise I am unburdened by symptoms that I attribute to MGUS . I have yet to see a neurologist because I’m having a hard time getting in to see one. My hematologist/oncologist believes that the neuropathy is due to my well-controlled, type two diabetes. It’s very well controlled through diet and medication, so he and I disagree on this.
For most MGUS patients, it is a watch and wait situation. They watch for your numbers to indicate that your condition has advanced to smoldering or multiple myeloma. Hopefully this will never happen.
The sociopolitical aspects of healthcare and the health of the citizens of the United States is a worthy topic for discussion. Oh if we ruled the world.
I have little of value to offer except to welcome you. I hope that in the next few weeks you will get more clarity about your health and your healthcare team can connect some dots for you. Some with MGUS do receive treatment if they meet that threshold.
Have you considered getting a workup at a facility such as the Mayo Clinic where all the specialists live under one roof and actually communicate with one another? If my disease advances, I am certainly going to do that and had a very good experience with my husband 20+ years ago at the mayo clinic when he was struggling with cancer.
Best wishes for the very best outcome.
Patty