[kristina]

Difficult patient, doctor's are confused.

by kristina on Mon Jun 03, 2013 5:52 pm

I had a 24 hour urine test that showed a high K/L Ratio 16.84 (H) ref. 2.04-10.37 mg/l
Kappa 79.00 (H) ref. 1.35-24.19 mg/I

I had several urine tests prior to the one above, initially it was just my Ratio that was high, then the second test showed elevated Kappa, along with continued increase in the Ratio. Due to those results, I had a BMB in January, 2012 that showed 7% plasma cells. At this time, my Serum tests for FLC were normal.

I then had another BMB in April , 2013 that showed “ 5% atypical polyclonal cells, and decreased (without rings) sideroblast stores”. A 24 hr. urine test done in April, was negative for M-spike and abnormal protein. However, a Serum FLC now shows my Kappa FLC are slightly elevated at 2.82 MG/DL (Ref. range 0.33-1.94). My lambda is normal at 2.50 (Ref. range .57-2.63 MG/DL, and my Ratio is normal at 1.13 (Ref. range .26-1.65)

My local hematologist says this isn't MGUS because of the "polyclonal" designation in the latest BMB. My hematologist at KU Med Center says he still believes this is a low level MGUS and needs yearly monitoring.

I have elevated levels of Factor VIII and Von Willebran Activity. I had two pulmonary embolisms in 2006, and an embolic shower to the brain in August of 2012. I am on a therapeutic dose of Lovenoxs, but I continue to have issues with micro-clotting, evidenced in progressing osteonecrosis of both knees. I had a rib broken in 2010 due to unknown cause, although latest skeleton survey is normal. It was noted on my 2012 BMB that there is a thickening of trabecular bone.

I have also had several work ups for Autoimmune disease (MS, Lupus, Scleroderma, Sarcoidosis, etc.)

I am confused about how I could have 5 or 6 urine tests that showed increases in the Ratio and the Kappa, and then a year later it is no longer there, but is now showing in my serum results. My doctor's just don't know what to do with me, and seem to be just as confused as I am.

What should I do to verify if I have MGUS or not? Could it be something else given I have a high Kappa FLC and something going on in by bone marrow (a myeloid disorder, etc)?

I am also wondering about the decreased levels of sideroblast iron (without rings) and what that implies.

Any thoughts or suggestions, would be greatly appreciated. Thanks, Kristina