I am pretty new here, I have looked around a little, read a little, etc. I am the type of person who likes to kind of linger in the background, not put myself "out there," so to speak, so this is way out of my comfort zone, as I am sure it was for you to. I have really felt alone in this journey so far, even though I have a wonderful husband, 4 kids (ages 12, 13, 16 and 18), supportive family and friends. I realized that I need to get connected with others who are on and have been on the same journey.
So here is my story. I have rheumatoid arthritis (RA) diagnosed in 2007 (in clinical remission since 2009) and cutaneous sarcoidosis with minor lung involvement diagnosed about 5 years ago. Last winter (2015/16) I had not felt well on and off, was tired, got strep throat, which I hadn't had since I was a child, and had some back and hip pain, so I scheduled an appointment with my rheumatologist in April of 2016.
On April 14, 2016 she ran a few more blood tests that normal and my results were:
Total Protein 8.4 (6.0-8.3 g/dL)
M-Spike 1.0 H (0 g/dL)
IgG 1745 H (700-1600 mg/dL)
IgA 320 H (70-400 mg/dL)
IgM 297 H (40-230 mg/dL)
Kappa free light chains 343.5 H (3.3-19.4 mg/L)
Lambda free light chains 15.5 (5.7-26.3 mg/L)
Kappa/lambda ratio 22.6 H (0.26-1.65)
The rheumatologist referred me to a hematologist, and he wanted to cover all the bases, although he initially thought it was all related to the RA or the sarcoidosis. I did a 24-hour urine analysis, bone marrow biopsy that came back with 10 to 20% plasma cells, PET/CT that showed some areas of concern, so did a tailbone biopsy that was normal. My doctor says that I am a "Complicated Case" and I was diagnosed with IgG kappa smoldering multiple myeloma on June 8th, 2016.
I was to the emergency room once back in July with acute urosepsis, I have never been that sick in my life! At that point I did go to the Mayo Clinic and got a second opinion and that doctor agreed with the diagnosis.
I have felt bad on and off with a few week stretch being the longest time of feeling good enough to think I can just forget about this smoldering multiple myeloma ever becoming active multiple myeloma. I typically feel nauseous, but not constantly, with frequent stomach aches, dull/burning ache in my lower back and quite often along both sides of my back. Low energy and motivation more often than not it seems lately.
Blood work as of December 7, 2016
Total Protein 7.3 (6.0-8.3 g/dL)
M-Spike 0.9 H (0 g/dL)
IgG 1673 H (700-1600 mg/dL)
IgA 266 H (70-400 mg/dL)
IgM 202 H (40-230 mg/dL)
Kappa free light chains 913.0 H (3.3-19.4 mg/L)
Lambda free light chains 15.2 (5.7-26.3 mg/L)
Kappa/lambda ratio 60.7 H (0.26-1.65)
I go back the first part of February for another 24-hour urine sample, more blood work, and another bone marrow biopsy.
Thank you all for listening
