<s>[INST] Not an easy case 46 yrs old dx with multiple myeloma presented atypically 30% plasma cells in the marrow , no lesions or kidney failure , low grade fever 100-101 on an off for 6 months with a hemoglobin of 8. Also showed moderate dysplastic changes in the red cell line and mild dysplastic changes in my white blood cell line consistant with possible early mds. As doctors in both New York and Boston attempted to determin what was taking place Each specialist agreed I had their disease to an extent Myeloma or MDS but they felt that it was not their disease causing the anemia because the extent of each disease was minimal. Decided to try treatment with levoquin with no improvement and then prednisone with no improvement. Symptoms progressed developing bone and muscle pain, weight loss, migratory joint pain with numbness and intense pain to my hands and feet. At this point I developed Pure Red Blood Cell Aplasia and became transfusion dependent needing transfusions every 10 days for apx 3 months. The doctors at both institutions thought possible infection. Complete infectious disease work up done all of which was negative. Tests for Lupus also negative Labs showed : a monoclonal protein of .67g\dl at its highest (decreased over time with trial of levoquin and low dose prednisone ). Elevated lambda light chains of 115 mg/dl (decreased with levoquin and prednisone) Bone marrow involvement was continuing to increase moving from a showing of 7% plasma cells to 30%. Even as all my serum marker numbers were decreasing% of bone marrow involvement was increasing. Out of lack of knowing what else to do and now having developing the Pure Red Blood Cell Aplasia and needing frequent transfusions they started treatment with bortizimed. which improved my hct and fevers and brought my myeloma numbers down some . I then went on to have an auto transplant which did not seem to make much of a difference. M spike prior was 0.17g/dl and 90 days post is .31 g/ dl. Told the marrow shows a 5% population of plasma cells which seem to have not responded to treatment. At this point I feel I have fully recovered from the transplant. Unfortunatly over the past few weeks my fevers and pain have returned as well as the bone pain, numbness,muscle pain,cramps and twiching as well as a slight tingle sensation to my face and tongue .I am not anemic at this point but it feels like it is starting all over again. I am being told not to worry and we may never know what the exact cause is but should just cont with the various treatments for myeloma for however long they will work and then possibly an allo transplant down the line. At this point we have started bortizimed again only. Concern has been expressed with use of lenalidomide due to developing Secondary Primary Cancers. My question is has anyone out there seen a patient with a similar presentation and if further diagnostic evaluation is indicated since it has been stated they are not really sure what we are treating. I do fear we have muddied the waters with the treatments already given Had genetic studies done which may help in determining what is taking place and have not had if fully explained to me: Normal karyotype. Fish evaluation done in NewYork showed various abnormalities. Detecting four copies of the FGFR3 and IgH genes in 2.4% of the cells studied. The MLL gene in 3% of the cells.four copies of chromosomes1,5,7 and 8 in 3% and 4 copies of chromosome 17and 20 in 2.4% of the interphase cells examined . I also have Monosomy 13 and a 14q32 (IGH sep) translocation I was an healthy 46year old prior to all of this. Had not been seen by doctor for a sick call in over 20 years and was training for a marathon. I discovered I was anemic by accident while training as a student nurse. Side note Also ahad a fat pad biopsy which was negative for amloyd. Still will have occ. prickly feeling to tongue and around lip [/INST] hi therei am not sure i can help you fullybut i can just suggest you talk to your docs about smoldering myelomamaybe the suggestion to them can helpbest of luckand sorry to be of little help </s>