I went to several specialist because of severe bone pain back in 2016. An immunologist ran several blood tests. One was extremely high and when I was told it was fine because they were only concerned if it was way low. I kept the sheet as it seemed strange to me even though I had never heard of the test.
After a bad car accident in April 2017 for which I was receiving treatments, they noticed all my blood counts were dropping. At first they thought I had a slow bleed from the accident. Ultrasound disproved that. I was sent to a hematologist/oncologist who continued to watch them drop for 9 more months til I was at the point of needing a transfusion. She decided I needed a bone marrow done in her office which was horrendous as she did not wait even seconds for the numbing shot to work before she plunged the needle for the bone marrow biopsy in. Two weeks later she matter of factly told me I had MM. I asked if she had a brochure on it. She said “No”. I asked how I could learn about it. She said, “There is a lot on the internet, but we don’t like our patients to read the internet. “ She asked if I had questions which I did! She did not answer one , but said she was ordering full body xrays, pet scan, and 24 hour urine test. I put on FaceBook my diagnosis and said I wanted a second opinion. 24 friends directed me to a phenomenal specialist in Chicago.
When I went back for my results 2 weeks later she said “The Pet scan showed something in your right ribs (Incidentally I broke a right rib 3 months before in my sleep and when I asked if it could have anything yo do with my blood at that time she told me NO!) and something in my left hip. But she did not know what that meant or if it was significant.” Then I asked about my 24 hour urine. She waved her hand and said “It was fine!” I said I wanted to go into Chicago to see this specialist in Multiple Myeloma for a second opinion. She was animate that she did NOT want me to go to him! I said I wanted copies of my results from the the three tests. When I read them my urine test was sky high! I called the specialist who got me in in three weeks! I had to get all my records sent to him. I was in stage 3 and he was amazed I was not in total kidney failure from the test results. He had to get me started on treatments IMMEDIATELY! I went through months of weekly chemo/steroid infusions. I was on Revlimid but had a bad reaction and was taken off it til my reaction subsided. I was put back on it but ended up in ER and my liver was badly affected. Thank God my liver has heeled and My kidneys are still working. Late November I had a stem cell harvest. Then December 6th massive chemo followed by stem cell transplant on the 7th. I learned in March after MANY tests and bone marrow biopsy that I had gone into remission. I now have to do chemo/steroid infusions monthly to try to hold my remission. I am so glad I got away from the first oncologist as I think she would have let me die. We really do have yo be our own advocates especially when your gut tells you things are not right! Oh— and that blood test run in 2016 that was sky high, I took those results in to my head oncologist in Chicago. Turns out I already had MM back then, but the immunologist blew it off because it was not what he looks for and treats! I thank God, all my prayer warriors, family and friends who have helped, and the amazing Dr. Jayesh Mehta at Northwestern in Chicago for saving my life!
