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Thread: SLE with multi-centric lymph node inflammation -lupus? Castlemans disease? Nhlymphoma

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    Default SLE with multi-centric lymph node inflammation -lupus? Castlemans disease? Nhlymphoma

    By LupieJuly 11, 2014Lupus with Lymphoma type symptoms (castlemans disease?)
    I have had lupus for 10 years. For the most part I control it. Take steroids as needed to control the flares, but generally speaking, my organs have been in great shape. In 2013, I gave birth to twins. I felt fine during pregnancy but post pregnancy I started feeling the lupus. I had a CT scan done in hospital and they said I had large fibroids. Anyway, over the next year I was on steroids, and have recently started benlysta to ween off steroids. I developed severe bronchitis in June from the twins and I was abnormally sick..bedridden with a bad cough in chest. I was having uncontrolled hot sweats, chills, fevers up to 103, terrible headaches and a wicked cough. Was put on a few different antibiotics an inhaler, and cough syrup, but wasn't getting better. They sent me for CT scan after seeing something on X-ray which then turned into wanting a PET scan and then lymph node biopsies. I was basically told that I had textbook non Hodgkin's lymphoma likely stage 4 based on what was glowing on the PET scans. It was a wake up call. My family was mourning this news...as I mentioned I am a momma to 1 year old twins. The following week I had my lymph node biopsies which have come back negative?! Oncologist has put me at 90 percent non cancer but following up in a month to redo the PET. I still don't know what is wrong thou? Is it multi centric lymph node inflation from lupus? Could I have castlemans disease? Who is the best rheumatology/oncology team to see in this situation. Someone with a lot of experience? I just want to know what it is and what I can do. Do I have lymphoma or is castlemans which is basically dormant lymphoma? Or is it something totally diff!? What doctors does anyone suggest and what works!!! I know this is rare.

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    Unfortunately, we are not doctors and cannot speak to what your issues might be, could have been, or could possibly be. You are being seen by an oncologist and a rheumatologist..those are the best two types of doctors to see with reference to your diagnosis and your issues? I wish that I could be more helpful to you, but I am just not qualified to give you the answers that you seek. I am sorry.

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