Hello! I am going through all this crazy testing for lupus because I had a high positive dsdna. I have all the symptoms and had to wait for over a month to see a rheumatologist. Between that time period, I have suffered terribly and I couldn't do anything without swelling of my throat and SOB! I went to ER for that and they gave me 7 prednisone of 20 mg. that worked really well and I could open my chest more to breathe! By the time I saw my rheumatologist all of my symptoms really lowered go figure. I had an entire photo diary, symptoms diary, temperature diary and an entire timeline of all my symptoms! He didn't even look at any of them and when he asked me questions, he asked me with answers. For example, he asked "so you don't have any SOB or swelling? And you don't have a rash or joint pain?" I told him that I most definitely did and I was really confused with threw me off completely. He checked rotation of my knees and my ankles and wrists and looked under my fingernails with a light. That was all he did! Not even joking! I told him about my dry mouth and eyes and loss of hair and every symptom that goes along with lupus and he talked over me every single time and wouldn't let me finish till I showed him a pic of my knees that were swollen. He said I had a high dsdna but my ana was negative and so was my RA. My ESR and CR were high too. He said, "I don't know why you are swelling but you don't have any of the sigs like I have for lupus. I'm going to rule out lupus completely. I don't see any swelling or joint problems now." I completely turned pale and my skin started burning! I started crying but I hid it from him. He noticed I think and he left. He came back 10 min later and said, " I think something is wrong with you but I think it's heart disease. I'm going to run a few more blood tests and send you to get an ECG of the heart." I was then really confused because I have always had perfect heat tests and nothing else at all that showed any signs of heart disease or failure. I had no idea where he came to this. That was two days ago. I went to ER today for neck swelling and I couldn't bend my wrist and all of my results were normal again. I don't understand what's going on. Can someone please give me an idea or similar experience?
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