I'm new here, and desperate for some answers or suggestions that will help me get a diagnosis. For the past two years I've been tested for everything under the sun, and the docs keep coming across "incidental diagnoses," but then tell me that what they find (hereditary hemochromatosis, non-toxic multi-nodular goiter) isn’t what's causing my symptoms. I've had increasing difficulty swallowing for the past year and a half, difficulty getting a deep breath (like I have to work at it), the feeling that someone’s standing on my sternum, pain in my chest or all around the rib cage, (feels like my ribs are squeezing me very tightly), and the past couple of months my neck has started occasionally swelling, usually on the right side but sometimes on the left too. I’ve also felt like I'm being choked by someone on a few occasions. My primary dr. said he could see that the sternomastoid muscles in my neck were swollen just by looking at me. Now the skin on the neck occasionally turns red and feels hot when this happens. The nodes aren’t visibly swollen, but my neck feels full, feels like the right side is bigger than the left, and feels tight and aches. I also get weird, random pains in my head, behind the ears mostly, but occasionally just in the back of the head, or, lately, in the right ear too (though not like an earache). My right collarbone has been hurting too, above and below it. Sometimes the pain seems to radiate from the right ear, down the neck, and around the whole area.
I had a neck ultrasound for lymphadenopathy that showed thyroid nodules, just had a biopsy, and the results said there were "mixed follicular and hurthle cells" and colloid and something else, and that it’s consistent with non-toxic multi-nodular goiter, and benign. If that's not what's causing the pain, swelling, choking, difficulty breathing & swallowing, etc, I don't know what could be...unless it is lymphoma. My dad had non-Hodgkin’s, but I don't know much about lymphoma and have questions. Is it possible to have lymphoma and not have visible or palpable nodes? (I only feel one on my right, about the size of a pea or almond.) Since I had a staph infection in 2001, I feel that node off and on, particularly when I’m tired…which is all the time. Also, I’ve had pain in my left iliac crest for four or five years, and recently have horrible pain in my tailbone area. Also, recently I've noticed that after having a glass or two of wine, my neck and ears get hot and a little red.
If anyone has any suggestions or thoughts, I'd be so grateful. I don't even care what the diagnosis is at this point - I just want one so I can figure out what it is and how to deal with it. The thought of going on like this indefinitely never knowing what it is has just gotten to be too much. Sorry this was so long. I'm just feeling desperate anymore.
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