CIDP and plasmacytoma?????????

    • Anonymous
      September 8, 2007 at 10:18 am

      Hi everyone, I haven’t been on the boards for a while because my husband had a terrible time for the past 5 mths being in ICU. Apart from everything that is going on with the ventilation, he’s had a PET CT scan yesterday that has been requested by his neurologist for some time. Now the scan showed in the skeleton, intense abnormal uptake that is related to a large lytic lesion in the left side of the sacrum indicating active disease and is consistent with a plasmacytoma and some diffuse uptake in the pancreas suggesting chronic pancreatitis. I am terrified, The docs in ICU said we should not jump to the conclusions until a biopsy is done to those cells and get back the reports , but I can’t help it. Did any of you had a PET/CT that showed something like that , but it is not cancer? We have to wait until Monday for the neurologist and see where we go from here, but the waiting and all the info that I gather from the internet about plasmacytoma is making me literally sick worried. Any input would be much apreciated. many thanks. Daniela

    • Anonymous
      March 13, 2008 at 12:03 am

      It is no doubt too late to be of any help, but about three days after being discharged from the hospital I experienced severe upper abdominal pain. The diagnosis was pancreatitis, based on an elevated lipase enzyme. I have had regular screening including endoscopic evaluation and MRI. The only results are signs of calcification in a few spots within the pancreas. There was a debate among the specialists over whether this was GBS related that has never been settled.

      If you still monitor the board, I would be interested in how your husband has fared (well, I hope), and whether there was ever any development as regards the pancreas.


    • Anonymous
      March 13, 2008 at 12:29 am


      I am so very sorry to hear about what your hubby is going through. I really dont have anything to offer unfortunately, just want you to know that my heartfelt thoughts go out to you and the whole family! Please keep us updated on what the tests reveal.