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  • My endless swollen lymph node diagnosis journey. Can you help shed some light?

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    Old 08-04-2015, 07:12 PM   #1
    goosesandal
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    My endless swollen lymph node diagnosis journey. Can you help shed some light?

    Hi there,

    First of all I'd like to preface my post by apologizing for posting on the lymphoma board without having a diagnosis. I understand that this can be incredibly annoying for those that are already diagnosed. I am not meaning to take space from you, I just don't know what other board to post in as this concerns my lymph nodes and I am desperate for answers at this point.

    I am a 25 year old female. I quit smoking 2 years ago now and have been using an ecigarette occasionally. I drink beer occasionally but never hard liquor. I don't use any drugs besides prescribed medication (but this ordeal has really made me want to start using something else!) I am not super active, but not in terrible shape (5'3, 122lbs.).

    I have been dealing with swollen lymph nodes now for 5 months. I found that my right cervical node was swollen on Easter of this year. I left it alone for a few months. When it was still there in July I began investigating. I initially had an MRI of my head and brain as I had a terrible headache that affected the right side of my head. It made my eye feel swollen as well as my cheek and jaw, although they weren't actually swollen. The headache moved all around the right side of my head but was especially bad on my right eyebrow. The MRI showed nothing (besides my brain of course).

    The headache eventually subsided but the nodes remained. I then went on to have a CT scan of my head and neck. This showed that the nodes on both sides of my neck were swollen, rather than just the right side that I suspected. An ultrasound confirmed that the left node was 2.5cm and the right was 2.6cm. The swelling on the right side of my neck makes my parotid gland stick out. There is also a shoddy node behind my ear. The CT and ultrasound showed nothing else abnormal (according to my ENT, the radiologist said there may be some Graves ophthalmology stuff to look into, but I'm not even going down that road yet). I have had tons of bloodwork done and everything looks great. In fact, the markers for lymphoma that are supposed to be high are actually low! I have also had an ultrasound of my spleen as I have a dull feeling of pressure in the left side of my chest constantly (my spleen is so little the tech had trouble finding it at first, no issues there!). I also had an X-ray of my lungs and an EKG because of shortness of breath and terrible pains in my left chest and shoulder (making my arm numb occasionally, I'm experiencing the pain right now and it is killer, I don't know what to do about it).

    Essentially, my symptoms are the swollen nodes, chest pressure, arm shoulder and chest pain, and aching from the swelling. These suckers hurt, like all the time now. The nodes don't hurt to touch, but they ache all down my neck to my arm, and up into my head and ear. My parotid gland feels irritated all the time from the swelling.

    The course of action so far has been 1 week of amoxicillin (my lymph nodes hurt A LOT more during this time and the swelling seemed to go down for maybe one day, then came right back), a few days of azithromycin (was instructed to stop taking it as it seemed to be making it worse), and am now on my third day of Minocycline. As a last ditch effort to avoid an excision biopsy I went to my dermatologist to have a skin punch biopsy on my chest. I had a rash there and up on my neck for quite a while and never thought it was serious. I thought it might be worth pursuing since I'm having all these issues. It was found that I have bacterial folliculitis and was prescribed Minocycline. I have no idea how the hell I got this! My doctors have said that it is a slim chance that the folliculitis would be causing the swollen nodes, as the infection would most likely drain down to my pits, instead of up to my neck. I haven't seen any results from the Minocycline so far besides itchy skin and a red face!

    I have none of the classic lymphoma symptoms besides the swelling. No sweats, fevers, no itching (until lately, which I'm assuming is this med) and no extreme fatigue. I've been seen by like 4 different doctors and can't get an answer. I fear that my answer will only come with surgery, which I am not excited about. My maternal grandma and paternal uncle have both had lymphoma. My uncle had his in his 20's, which is why I'm a little worried here.

    Has anyone had an experience like this one?!! What do I do here? I know that no one here can diagnose me and I don't expect you to. Hell, my own doctors haven't been able to diagnose me yet. They have spoken to me seriously quite a few times about the possibility of lymphoma because of the size of the node enlargement. If I have it I just want to know and get treatment started! I am in so much pain and haven't been able to live or enjoy my life because of it! I am starting my junior year at university this fall. I don't want to have to cancel it because of chemo!

    Please, if you can relate, let me know. I'm just going crazy over here looking for some kind of answer. Thanks so much for reading this long and rambling post.

     
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