@magic3ems
I totally understand your reluctance to go back to see the oncologist. It is a scary thing. I’ve been going for three years now regularly and I have to say, I now find my oncology visits reinforce a feeling that everything is under control. With every visit he says“your numbers are stable. There is nothing to worry about, but if they do spike and we find that you have drifted into smoldering multiple myeloma or multiple myeloma, you have to keep in mind that it is very treatable now. We’ve got you.”
It’s also reassuring to me to chat with the patient on connect. Some of the patients who post here have been diagnosed with MGUS for decades. They are living full, rich lives, and they’re not letting this blood disorder define them. MGUS is not cancer, and there is very low risk for progression to multiple myeloma. When you think about it, you are fortunate to be among us who know that we have this blood disorder so we can be monitored to make sure we’re not getting sick.
I’m sorry to hear that you are having these symptoms. So many of us have coexisting conditions and one can’t really attribute any of those symptoms to MGUS without further analysis so you need to get back to the doctor. Whatever it is, it’s not going to get better as your anxiety grows. Anxiety isn’t your friend and will really make you feel sick. That may be all it is.
But whatever it is, it is not going to get better without further investigation.
Were you able to get an appointment? Have you been referred to a hematologist/oncologist? That is definitely a good first step.
Will you let me know that you have scheduled an appointment and when you will go see the doctor?