I was diagnosed with MGUS in 2021. My symptoms were severe right rib pains on my back, intermittent fevers, headaches and sometimes dizziness. My former PCM would not listen to my complainta for over a year. He was saying that I was fat and should lose weight. My BMI at the time was 27.3. I am a Family Nurse Practitioner. I had the fear that something was wrong with me, especially with my bones as I was earlier diagnosed of pre-Osteoporosis. My grandmother on my maternal side had Osteoporosis histories, with 3 in the family that were deformed, including my granmother who had spontaneous hip fracture.
On my father's side, he died of Multiple Myeloma at age 71. I was afraid. I related all these histories to my PCM, but he never paid attention. I then request from my insurance for a change of PCM in the group.
I was re-assigned a Family Nurse Practitioner, and the staff informed me she was a very nice and thorough provider. The first day she saw me, she asked me to please tell her my whole health history. She listened attentively! She then revealed to me some abnormal lab results in my record for the past 2 years, and asked if those were discussed. I told her that I have never been told anything about abnormal lab results, and have no access to their portal.
We talked and agreed on repeating the blood work immediately. She also had me create access to the portal. The results of the lab result she ordered were worse than the previous ones. She immediately referred me to HEM/ONC STAT!
At HEM/ONC first visit, the physician was very kind, patient and understanding. He ordered bone scan, lab draws and urine test, all done within one week. The Bone scan result now reveals total osteoporosis. The lab and urine results were terrible. He went ahead and performed bone marrow draw. He then confirmed that I have MGUS.
Since then, I visit twice a year (seeing him once) and his other staff once. I have been doing labs every six months. Fortunately, the numbers had gone down remarkably. There are just minor negative numbers now. My last test was this past month, and the results were better that the previous one.
However, I am anxious at times, and I pray that a cure will be found soon to prevent transition of MGUS to Multiple Myeloma.
We are gathered here praying for one another on an issue we have no power of control over it. We will continue to talk to one another, encourage each other, and believe that redemption from this disease will happen at our time.