@hgearhart
I’m so sorry you’ve had so much to deal with. As a MGUS patient I feel as though my health monitoring is sometimes a bit overwhelming, I can only imagine what challenges you face.
It does sound as though you are frustrated that your concerns aren’t being taken seriously. There are established thresholds that differentiate MGUS from smoldering and Multiple Myeloma. You might start with your hematologist/oncologist and ask for him or her to answer all of your questions. You can’t make informed decisions until you have all the correct information. Ask about bone biopsy, the cause of the lesions, blood analysis numbers and any other questions you have and then what are your treatment options. If you can’t get information from your provider, perhaps a second opinion is warranted. I don’t know what is available in your area, but a cancer treatment center that treats Multiple Myeloma is your best bet. MGUS is not cancer, but it is a precursor condition for Multiple Myeloma and it’s essential that your provider is well prepared to treat you if necessary.
I know when you Google Multiple Myeloma it will scare you, but they have made remarkable advancement in the past decade and it is a treatable disease. I hope you never cross that threshold but the good news is that if you do, there is treatment.
I wish I could be more helpful about your specific questions, but there are so many variables and the person who can best address this with any specificity is your doctor. Be assertive about getting the information you need. Advocating for your health is important.
I’m wishing you the best possible outcomes. Let us know how you fare with all of this.
Patty