undiagnosis for multiple bone lesions

[survivor0611]

My husband, 59 yrs., went in for a physical which led to a ct scan which showed multiple mixed lesions, predominantly lytic lesions on his: humerus, sternum, spine, ribs, pelvic, and left femur...pet scan and mri done with and without contrast showed the same lesions and more lymph nodes than usual in the mediastinal area though not enlarged, one lymph node in groin also lit up on pet scan.  Biopsys on left back of hip, rib, and lymph node came back normal (lymph node only said "rare wbc's seen" as extra comment).  All scans said in the findings "compatible with extensive metatstatic disease or multiple myeloma" but lab work and biopsys don't support that diagnosis.  Serum and 24 hr. urine electropherisis was negative, light chains kappa and lambda were normal but ration was elevated at 2.36.  Testing was done for Blastomycosis and 3 other fungal disease, all negative.  He is being treated for disseminated Blastomycosis "just in case" with itraconozale.  Although he is feeling better...we are very concerned as to why his bones are eroding away.  Biopsys for FNA but a core bone marrow biopsy is scheduled for 9/11.  Only other test results showing anything were ESR at 29 and T-ALKP  at 164.  Any help in suggesting where we go from here is very much appreciated!

[GGlock]

Any more results to this? I have also been through the long process of mysterious bone lesions that turned up negative after many tests and scans. I have no idea what can be done. Just left hanging with doctors who can only shrug their shoulders. I hope everyone is ok.

[survivor0611]

Thank you for your input!  I have done much research and have read of many cases where it took several biopsys to find the malignant cells.  My husband has over 30 lytic lesions, and has had 2 bon biopsys by FNA, one lymph node also FNA and then the core bone marrow biopsy.  I have also learned that many times disease can show radiologically before they present themselves clinically in blood and urine but considering the large number of lesions I am very concerned we are missing something.  The Oncologist we are seeing is the same I have for breast cancer stage3 invasive and aggressive but now in remission for 7 years.  He has me on a 10 yr. program of meds., after the first year of aggressive treatment.  My hope is that since he was proactive in my situation he would also be so with my husband.  We live in a small community and travel for medical care (through Marshfield Clinic).  I just don't understand how there can be that much disease process going on in his bones that cannot be identified!  Thank you for your concern!

[LowCortisol]

I too am sorry to hear of your husband's problems. I cannot offer much guidance other that what I was told when I was about to get a FNA biopsy on a lesion in my hand that was growing near a nerve and a bone.  

I was told that these procedures are not always reliable as they drill into the body and do take part of a lesion away for examination BUT if sarcoma is present in the lesion it is possible that it is not present in the core sample which means the pathology result is a false negative.

On Oct 3 I hope you are not seeing an oncologist, but a  highly experienced one. The more patients such an oncologist has seen the better the diagnosis your husband will get.

[survivor0611]

I can't thank you enough for taking the time to respond to my post requesting help!  My husband did have the core bone marrow biopsy and aspiration, which came back normal.  He did also have his serum calcium checked, again normal.  Finally they did a nuclear bone scan to look for changes in the lesions.  We just got the word that all the lesions remained the same, no changes.  So we see the Oncologist for a consult on October 3rd, and then will go back to the Infectious disease specialist later in October.  His fungal tests were done by serum, urine, antibodies/antigen testing then also a culture was done...all negative tests, no growth on the culture.  We are at a complete loss as to where to go from here.  I am going to discuss what you suggested regarding parathyroid, vitamin D, etc. as well.  Again thank you for your response!

[Dr. Kokil Mathur]

Hi!
I am sorry to hear about your husband’s medical problems. The other suspect apart from myeloma is a sarcoma. A core bone marrow biopsy may throw some light. It can also be a lymphoma, and so maybe another lymph node biopsy should be scheduled.
The third possibility is osteomalacia, so serum calcium, vitamin D, parathyroid hormone and magnesium and phosphate levels should be tested. Please discuss with your doctor. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.