Discussions By Condition: I cannot get a diagnosis.

Chronic swollen lymph nodes in neck

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: missbarbiegal26
  • June 13, 2009
  • 04:21 AM

This may be a bit long. About ten years ago I awoke in the night in severe pain. The lymph nodes under my arms, in my groin and neck became swollen and painfull. My doctor at the time did all the tests he could think of, and the only thing that was out of the ordinary was a very high white blood cell count. Because of this, the doctor suspected some kind of cancer, and sent me to a ENT, who removed a node near my ear. Nothing came back and I got no diagnosis. Eventually the nodes under my arm and groin went back to normal.

However, the nodes in my neck never reduced in size. There are about 20 to 30 bumps all around my neck and clavicle. The pain went away and my doctors dismissed me. A few years later, they became painfull again and another ENT agreed to remove the most painfull ones. On the eve of the surgery, he changed his mind. I learned to live with the pain. A few years later I got mono, which made my whole neck swell, making the nodes that were allready there increase in size, even when I was no longer sick. A few years after that, I had my tonsils removed, but again that did not help.

I have been diagnosed with hypothyroidism, but it is not being treated at this time. Now, there is one node in particular in the front on the left side that is hard as a rock. It makes it difficult to swallow and move my neck. I don't want to bother with another doctor just to be dismissed again. Does anyone have any suggestions as to what is going on? I'd even take suggestions for a type of doctor that deals with this sort of thing. Thanks for reading.

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3 Replies:

  • It could be a type of Kikuchi disease. Check out this link:http://www.wrongdiagnosis.com/k/kikuchi_disease/intro.htm
    gr8tful 175 Replies Flag this Response
  • Have you ever had a thyroid Ultrasound ?Could be enlarged nodules in there causing more swelling, if they become too big and interfer I believe you can have them removed...The other idea that pops to mind is to see a lymphatic drainage specialist ?Just a thought anywayI hope you find the answers :)Samanthahttp://www.undiagnosedillness.org
    Anonymous 42789 Replies Flag this Response
  • I have never had an ultrasound on my neck, but I have had several CT scans and x-rays. Thank you both for the suggestions.
    missbarbiegal26 10 Replies Flag this Response
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