A year ago, I noticed several large lymph nodes under my jawline and at that time had been struggling with fevers, a strange rash, and fatigue for several weeks. I went in to see my doctor, and was tested for everything under the sun, with all results coming back negative for the most part. I had abnormal cbc's and a high sed rate, but nothing else that stood out as abnormal. My glands continued to grow despite being on antibiotics (some larger than 2cm) so we decided to have the largest one biopsied. It was negative for lymphoma, with no cancer cells present. I continued to struggle for another month until I began running fevers over 103 for four days straight. My doctors decided to have me hospitalized and they did every test imaginable. Even a bone marrow biopsy. Again, negative for cancer. I was finally sent to a rheumatologist who diagnosed me with Adult Stills disease and began treatment. Even though the diagnosis wasn't a perfect match for my symptoms, I trusted his expertise and figured this nightmare was over. I was wrong. After increasing the steroids and immunosuppressant drugs to the maximum level, my lymph nodes are still growing and new ones have appeared. The newest growths include a large lump in my breast, a mass under my collarbone, and a large lump at the base of my skull. I have also begun losing large amounts of hair and began having horrendous headaches, in addition to the continuing fatigue, rash and low grade fevers. My rheumatologist sent me back to see a hematologist for further testing, saying that his best guess is that this is "some sort of autoimmune disease" (although none of the blood tests can confirm this) and I will most likely need medication for life to slow the growth. Upon seeing the hematologist, who spent 2 minutes in the room with me, he briefly touched one lump saying he didn't know what it was, and ordered a CT scan to compare the sizes and locations of the other growths over the past 6 months. I'm currently waiting to be scheduled for this. I feel completely overwhelmed and frustrated by this whole situation. My doctors have tested me-and I'm sure feel frustrated that these issues are still unresolved given that the tests show nothing of significance. I just want to be well. I'm not sure how pushy I should be about these new lumps, given that they have already run so many tests. I'm at a loss for questions to even ask at this point. I haven't had a mammogram yet, because I was nursing at the beginning of this whole nonsense. Should I ask for one? What else can I do? I feel like they are missing something big-but I don't understand what else this could even be.
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