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Karen's Unspecified Non Hodgkin's Lymphoma

My exchange if for anyone interested in viewing my 2nd journey through ... more

Sounds like NHL, but not sure - looking for sugges...

I'm new here, and hoping to get some suggestions that will help me get aa...

Posted by IsolatedThunder

I'm new here, and hoping to get some suggestions that will help me get aa 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 the things they find (hereditary hemochromatosis, non-toxic multinodular goiter) are not what's causing my symptoms. I just had a biopsy this week on my thyroid nodules, which I really believed was the problem because of my symptoms: I've had increasing difficulty swallowing for the past year and a half or so, difficulty getting a deep breath (feels like I have to work at it), the feeling that someone is standing on my sternum, pain that is sometimes just in my chest, but most often 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, and from time to time the feeling that I'm being choked by someone. 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 when this happens, and feels hot. The most frequent thing in the neck though is that there are no visibly swollen nodes, but my neck feels full, feels like the right side is bigger than the left, it hurts and the skin feels hot. 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.

My father had Non-Hodgkin's lymphoma, and more than likely had the hemochromatosis, but there is no way to verify that, since he died before I was diagnosed, and we had never even heard of it. I seem to be following in his footsteps when it comes to having miscellaneous health problems all the time.

They said my biopsy was benign. The results say there were "mixed follicular and hurthle cells" and colloid and something else, and that that is consistent with non-toxic multi-nodular goiter. If that's not what's causing the pain, swelling, choking, difficulty breathing and swallowing, etc, then I don't know what could be...unless it is lymphoma. But I don't know as much about lymphomas as I do about my symptoms, and have questions.

Is it possible to have lymphoma and not have visible or palpable nodes? (There is only one on my right that I can feel, about the size of a pea or almond, but the docs don't seem to notice it). I had a staph infection in 2001, and for years now I feel that particular node off and on; the more tired I am (and I'm exhausted all the time), the more I feel it. Are there things here that aren't consistent w/diagnosis of NHL?

Another couple things are that I've had horrible bone pain lately in my pelvic bone (tailbone level, roughly), and for four or five years have had that pain in my left iliac crest on the pelvic bone. Also, recently I've noticed that after having a glass or two of wine, my neck and ears are hot and a little red.

If anyone has anything at all, any suggestions or anything, 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 thoguht 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.

Thanks everyone.View Thread

Posted byIsolatedThunder

0 Replies | Reply | Watch This DiscussionReport This| Share this:Sounds like NHL, but not sure - looking for suggestions. I'm new here, and hoping to get some suggestions that will help me get aa...

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