Never ending tests with NO answers
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22 yr old female with already established graves disease.
10 months ago I noticed a hard lump in my neck that I was concerned about since it was painless and about 3 cm. I was regularly exercising and eating healthy and also started to notice gradual muscle weakness regardless of the excessive or amount of time spent and light headedness/dizziness. I ended up slowing down with working out since it was becoming too hard and trying to eat more, however symptoms only got worse. We thought it was graves disease acting up, but all blood work was normal and thyroid was not enlarged. I ended up just stopping working out all together, and the weight started just falling off. Nausea started setting in making it hard to eat a full meal, I would be in pain if I did eat a full meal and always feel run down and exhausted after eating. Nodes started popping up all over. I have sever lymphadenopathy in my neck, armpits, collarbone, shoulders, chest, stomach, and groin along with a lump popping up in my back near my spine. I've lost a total of 60 pounds in 10 months and am borderline underweight. I have anemia but that's all that shows up in blood work. We tested for lupus, il6, any and all autoimmune disorders and ended up doing an divisional biopsy of 2 groin lymph nodes that came back as paracortical hyperplasia. Pet scan showed no uptake in lymph nodes, minimal uptake in thymus. Did an axillary dissection and tested 2 more nodes which came back reactive hyperplasia. My doctors are frustrated, as am I. It's getting hard to make it through the days, and recently have had worsening symptoms. Diarrhea every day, and stomach pains. My left side aches on and off all day, and my muscles are weak and sore. I hav3 numbness and tingling in the weirdest parts that come and go randomly. At least a couple times a week I get a vertigo feeling like I'm on a ship and the room is spinning. I have had a seizure 2 months ago that they couldn't figure out what caused it. I did an MRI that came back good. I also have severe night sweats, my nails are brittle and split, as with my hair. I have bruised really easily but also could be my anemia. I am exhausted and need answers soon, we don't know where to go from here since my body isn't giving answers. I would also like to mention personality changes, mood swings (extreme) and depression. I also have had a problem with achy joints and ribs, but we have attributed a lot of symptoms to the lymph nodes being swollen. Any similar situations? I have done research for 10 months now and feel hopeless. I can't work out anymore, or eat right, or enjoy life. I have seen a hematologist, oncologist, general surgeon, endocrinologist, and gi doctor and all think this is lymphoma, but my biopsy says otherwise.
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