Hi, I'm a 44y/o male, w/spenomegoloy, FUO w/mild night sweats and lymphodenaphathy for over 2 years. Three CT's (contrast)show - Splenomegaly (craniocaudal dim.15cm), residual thymus tissue (vs. rebound hyperplasia), small swollen mesenteric lymph nodes. Small lymph nodes are seen within the inguinal retropertoneum and axillary regions. . No pulmonary lesions pleural or pericardial effusion. liver, kidneys, gallbladder, adrenal glands and pancreas unremarkable. I have been suffering from excruciating abdominal pain on the left mid to upper quadrant. Also, tremendous pain in lower back (I also have sclerotic lesions with central lucency right sacroiliac joint (probably causing the low back pain) and several bone islands). I suffer from acute chronic migraines. I have lipomatosis and firbomatosis. CBC's are normal, HIV neg, Herp neg, all STD's neg., HEP A,B,C neg, lyme neg. histoplasmosis. neg., CMV ant. pos.(in my twenties), EBV ant.pos (in my teens) Lymphoma blood panel was Neg. FMV neg., Infectious Disease tested me for every known disease possible no known causesand released me to Hematology/Oncology. Hematology gave me the Lymphoma panel that was neg and FMV, EBV, CMV etc., I have not had a Bone marrow nor have I had a lymph node biopsy. My family has an extensive history of lukemia, myeloma and lymphoma on fathers side and lukemia on mothers side.
What I did find odd was when my Physician (hemat) left and was replaced the new Hematologist who was shocked that I did not have a Bone marrow or biopsy done nor an MRI....The Physician said that they could not rule out myeloid (is that related to myeloma, my paternal aunt had that) or that they could not rule out malignancies with the thymus tissue. But then, that was the last that I heard from her. No follow-up, no nothing, even after several phone messages (this is a gov. facil.). I attempted to get a second opinion but the records that the doctor received indicated that I was released. All I have is the CT (which is dated 4 days prior to my last appt. with the hemo indicating splenogmegoly and lymph nodes remain unchanged), and my own notes to go by. Any suggestions on where I should go from here?
I don't know what kind of Doctor to see to get a second opinion? what are the possibilities of what this could be?