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Good Grief Erin, you certain have been run through the mill and back! I hope this new round of tests will lead to some firm answers for you, sometimes, I think just being left to wonder is the worst sort of agony, it prevents you from putting together a sort of game plan because you don't know what you are dealing with:(. As for the lymphnodes in your neck and chest and under your arms getting huge, I have had that for quite a while, also the tonsilitis/ear infection feeling, my rhuemy says that is caused by the nodes throughout the neck being "reactive" due to the lupus. I also have experienced the fullness above the collarbone, one day, being brave or maybe stupid, I pressed in really hard there on both sides at the same time, it made me feel pressure on my throat like I was being choked, and pain, and I puked as an almost instant reaction.....told the rhuemy about this and she said there were nodes there too, and the puking was probably from the pain I caused by pushing on them so hard:confused: As for the thickening, that is really strange,how it is underneath the skin. I have a friend who has SLE, Fibro, and Sarcoidosis who experienced the same sort of lymphnode stuff you are describing as well, she had a ct scan which showed her nodes under her arms/chest were very enlarged, she had a biopsy of one under her arm and the result was that it was enlarged due to the Lupus. When you mention chest fullness, that is something she had as well and that was found to be due to the sarcoidosis in her lungs, it didn't show on x-ray for whatever reason and was discovered by , I think it was called a bronchoscopy, where they put a tube like thing with a light on it down her throat and into her lungs and looked. I don't know if the sarcoidosis can cause thickening like you describe though. I might add that both she and I have normal thyroid function.
At any rate I am praying you get answers and relief soon, it stressed me out just reading what you have had to go through:(





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