@rustypenny
Welcome to the Mayo Clinic connect. It’s quite an emotional roller coaster ride when you are first diagnosed with MGUS. We all consult with Dr. Google and the results usually enough to make us anxious. Dr Google is a glass-half-empty gal.
Sometimes it takes a little while to find just the right physician. You want to look for a hematologist/oncologist who is an expert in treating multiple myeloma. MGUS is not cancer. For most of us, the risk of MGUS progressing into multiple myeloma is very low.
It’s important to try and relax as much as you can and not let your anxiety make you feel physically ill. It will. It will possibly even raise your white count. Your hematologist/oncologist will decide what kind of diagnostic testing you should have. You don’t need to react immediately until you get all the information and have a chance to sit down with him or her. Chances are, you will be in watch and wait limbo with the rest of us as usually MGUS does not require treatment. There is a lot of variation in the approach that different positions take even in terms of diagnosis. Not every MGUS patient requires a bone marrow biopsy. I was diagnosed over three years ago and have opted not to get one unless my lab work indicates that there is progression. Hopefully that will never happen. My numbers have actually gone down to baseline at the time of diagnosis after rising gradually for the first couple of years. I don’t expect my MGUS to go away, but I’m hopeful yet it will not become problematic.
You mentioned that you have not seen a hematologist. Is a referral to a hematologist/oncologist in the works for you? Have you spoken to your physician?