Discussions By Condition: I cannot get a diagnosis.

generalised lymphadenopathy = reactive lymph nodes

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: geebop1978
  • March 18, 2008
  • 10:26 AM

Hi i am a 29 year old woman with a history of swollen lymph nodes that never get any smaller.
they started in the right side of my neck then right under arm, right groin,left groin,left underarm, left side of neck and then in front of throat under chin and jaw. i have been sent to ent for hoarseness and a feeling of something being stuck in my throat when i swallow, ent Dr said everything looked ok then sent me to the breast clinic for nodes underarms.
this is what the breast clinic Dr said. last seen bilateral breast axillary ultrasound which revealed normal breast tissue and several prominent lymph nodes in both axillae all of which have preserved fatty hilum but with thickened core disease. these features are benign reactive type pattern. ultrasound guided core biopsy was performed on the largest palpable node in the right axilla and histology reavealed features consistent with a reactive lymph node and no evidence of malignancy.
my worries are not eased as Drs seem to be checking just the nodes under my arms. they have never checked the other areas that are affected ie groin neck throat. they all feel rubbery to the touch and never decrease in size, they just gradually get bigger, and until xmas never give me any pain, i had alcohol on 2 occasions over xmas and got a sharp pain in both sides of my neck almost immediately, i don't usually have alcohol and haven't drunk since. the nodes in my right groin feel a lot firmer thantheothers 1 feels like a stone but again does not hurt.
i am worried that maybe i have more nodes enlarged internally. i was told to basically go away as the one under my arm is not malignant.
i was wondering if you could give me some information as to what reactive lymph nodes are? whats the treatment if any? should i urge my gp to send me to a lymph node Dr? or should i just accept what the breast Dr said?
i have had enlarged nodes for a few years now but they all grew gradually and not all at once, they are all palpable and most are visible especially the one on the front of my neck, looks a little like a males adams apple.
the Drs do make me feel like its all in my head and i dont like going to see the Dr if i'm not in pain, i'm not a person that worries either but i would just like to know once and for all, if i have to live with these growing lumps for the rest of my life, i am most concious about the ones in my neck than any of the others as i can hide them easier.
i have occasional night sweats not every night but when i wake up hot and bothered all my hair is damp and i get really itchy i seem to always wake at the same time too ( don't know if this is relevant)
i have a rash that is mainly on my back and been there for almost 12 months i just put it down to heat rash when i sweat gp thought it was a virus at the time. i do feel really tired all the time with lack of energy but again Dr say i would be tired because i have 4 children aged 12, 9, 4,2 so i have a busy lifestyle, but i don't feel my tiredness is due to my children as its getting worse not better. i am not taking any kind of medications. i smoke approx 7 cigarettes a day don't really drink alcohol unless special occasion, and i have never taken any recreational drugs.
i was generally fit and healthy before all this. i did lose quite alot of weight at one point but Drs never found the cause, i have since managed to gain a bit but find it very hard to gain weight, Dr said to go to gym to lift weights as muscle weighs more than fat and there would be no point in gaining weight for the sake of it, so then i felt i looked like a teenage boy from the waist up. the Dr also said if i weighed more i probably wouldn't be able to feel my nodes so much, but i do weigh more now and i can still feel them.
i feel like i am being made to sound like a moaner but my concerns are genuine. as far as i know there is no family history of cancers and no one else in my family has ever had problems with nodes.
a blood test was performed to check for infection and a virus and came back negative. i think i covered just about everything.
any information will be gratefully received
many thanks in advance Geebop1978

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5 Replies:

  • Hi there,I am a 30 year old woman with several enlarged, reactive lymph nodes in my neck, on both sides. I have one on each side in the parotid gland. In January of this year my tear duct began swelling. The doctors tried me on every antibiotic and eye drop/ointments (turns out I am very allergic to ointments). After much debate, they did a biopsy of my tear duct, which came back inconclusive. During this time I also had an enlarged lymph node on the same side (in the parotid gland). After surgery I was injected with prednisone (steroids) and the swelling all went down (including the lymph nodes). After going off steroids, the lymph node grew, as did several others on both sides. Two months ago, the doctors finally became worried and did an ultrasound, followed by a needle biopsy, which was followed by a biopsy where they removed four enlarged, reactive lymph nodes. The results were that it was not lymphoma, but lymphoma can be masked by the steroids I took earlier in the year. I have since had several more enlarged lymph nodes and now am being sent to a haematologist and infectious disease clinic for further testing. When I had my ultrasound today the technician found several more enlarged lymph nodes. The doctor in charge came in to check my spleen (normal size) and my aeorta (no lymph nodes present). Apparently, if your spleen is enlarged it's very bad. There is also talk of having another biopsy in a month's time to remove and test the growing lymph nodes. Any thoughts, suggestions or information are welcome!
    Anonymous 42,789 Replies
    • September 1, 2009
    • 11:23 PM
    • 0
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  • Hi I was reading through your post and the very reason you mentioned sweating, and rash around the neck which is near some of the lymph nodes I think it might be worth checking (Hodgins-lymphoma) I am not a doctor by the way but your symptoms are similar.God bless.
    Anonymous 42,789 Replies
    • October 14, 2009
    • 11:49 PM
    • 0
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  • Hello, The mere fact that you mentioned the night sweats means you should get biopsied and tested for lymphoma, which is a common type of blood cancer. Please get to this immediately.
    Anonymous 42,789 Replies
    • January 21, 2010
    • 10:10 PM
    • 0
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  • Hi there, the symptoms and treatment you are having apart from the tear duct is very similar to what I am going through, just curious, what was the outcome of all the tests you had done? I am still waiting on futher ultrasounds and steroid treatments.
    Anonymous 42,789 Replies
    • February 10, 2011
    • 01:01 AM
    • 0
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  • I have a similar situation going on and was wondering if you ever found the cause for your swollen lymph nodes. Thanks! Dru
    Anonymous 1 Replies
    • November 6, 2014
    • 06:59 PM
    • 0
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