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Swollen lymph nodes for almost two years

Eva6
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I've never posted anything hear before but I'm desperate for some advice 

In October 2017 I noticed a lump on the side of my neck with no other symptoms. I had had night sweats on and off for years but never thought anything of it until they started to happen a few times a week. I went to the gp who told me to come back in two weeks if the lump hadn't gone down. This happened for another four months until I finally said that I was either to be referred somewhere for an answer or I was going to make an official complaint.

I had an ENT appointment in September 2018 and by this point I had swollen lymph nodes in my armpit that were unbearably painful. The consultant sent me for an ultrasound biopsy and a CT scan to query lymphoma. The ultrasound didn't show anything so a biopsy wasn't performed and my CT did show enlarged lymph nodes but "not big enough to be worrying" 

I was already really frustrated because I wasn't getting any answers and my health was getting worse and worse. For context I'm at university in Scotland away from home (Ireland), working part time and volunteering so I really didn't need the stress. Not to mention how worried my parents were, and were not a rich family who could afford to fly back and forth all the time.

I had a haematology appointment in December where I was basically told that they didn't know what was wrong with me and they were ready to discharge me. Not only were all my original symptoms getting worse (I now had painful lymph nodes under both arms and in my neck) but I also started to show new symptoms. I had constant kidney infections that couldn't be treated, i was exhausted all the time, my appetite had gone, I was getting headaches everyday and I either had a fever or chills, no in between. I pretty much broke down and demanded to see another consultant which I did in January.

This consultant told me that my scan looked clear and pointed out things they would be looking for. He then booked me an appointment for April which was basically a "wait and see" kind of thing.

Fast forward over two months and my health has gone from bad to worse. On top of everything else, I become breathless quite easily and it feels like there is a lot of pressure on my chest. I know that this could be down to anxiety but I can't help but relate it to everything else. 

Everytime I go to a GP I'm told I'm being overdramatic (I have bipolar disorder which doctors already judge right away). I'm really panicking to the point where I might have to quit my job and uni because my health is so bad and I'm in a constant state of panic.

No one in my family, close and extended, has had cancer so we don't know how to deal with it. I do know that I feel like a complete hypochondriac all the time and I cry pretty much every day over it. Would there be a possible way to seek a second opinion without having to go private which I really couldnt afford? I'm running out of options and if it is cancer I at least want to be given the chance to fight it.

Thank you for reading, any other experiences or advice would be really appreciated so I don't feel so alone in this 

  • Offline in reply to Chonie939

    Hey! 

     

    I know this reply I way late, and you probably won't see this, but my symptoms are very similar to the ones you described - was wondering if you could possibly tell me how it's going now, weather it was lymphoma or not? 
     

    I have many swolen lymph nodes, none of which have gone away to this day. My first one appeared in my neck, around 11 months ago. Around this time I had a problem with my throat where one of my tonsils were englarfed, epiglottis was swolen and visible, and I had lumps on the back of my throat. My GP declined to see me and prescribed pills which didn't work. I believe it to either be strep throat or glandular fever, whatever it is my painless symptoms in my theory are still there.

    over the last 10 months and more so recently I have developed several newer lymph nodes swelling along with many symptoms. I now have developed 3 swolen nodes in my right groin, 1 in the left. A few are swolen on my left abdomen, with one in each armpit. None of these have gone away. 
     

    My symptoms are: night sweats on occasion, uncomfortable itchiness, trapped and uncomfortable feeling in chest, feeling drowsy and tired all the time and severe kidney pain which has lasted for the last few months (I have seen several doctors and done many tests about this, all inconclusive.)

     

    it is worth mentioning that in my many pointless GP appointments, 2 blood tests took place and both were flagged for abnormally raised ALP levels in my blood. I also had a very quick Ultrasound scan on my abdomen (Kidney and bladder) Which I waited weeks for and it showed nothing. 

     

    Any help on this matter would be greatly appreciated, and I hope your symptoms have cleared up and you had a positive outcome from this! Any reply would be massively appreciated. Much love!

  • Offline in reply to markmozza

    Hi Mark ,

     

    did you got to the bottom of it ? I hope you are all good 

  • Offline in reply to Vanilli

    :confused: all!

    Sadly have had this condition for over 6 years now. Mine are seriously swollen to point of being chocked to yada yada! Few weeks ago couldnt swallow at 3:00am. Now stomach getting reflux from duodenum which doctors say cant happen. If so swap places please. 

    Now feel as though little time left. 
    Only thing I know helps is no food at all. Does this possibly mean all foods are contaminated? Water isnt though! 

    Let you know what ENT says in 2weeks time! 

    Meet2veg

     

  • Offline in reply to seebs78

    Hi I just stumbled into this chat with all of the same symptoms you described, would you be willing go share how you got on with this? I'm awaiting further testing and feeling anxious .. it's been going on for over two years now! 

  • Offline in reply to Lemmi

    Amazing I stumbled across this site looking for info on the same issues, I have had Swollen Lymph Nodes causing me quite a bit of pain and settles then fares up again in my groin for two years,  my first GP seemed disinterested after sending me for two scans. So I saw a different one I have had three scans and was told it is a swollen lymph node each time but then asked if it is better now I said no so have been referred to the hospital awaiting an appointment.

    Like most of you, I get the impression they think it is not that bad when I have a flair-up but am determined not to accept their views until I know more about what it is and why it flairs up.

    Drinks of different types seem to affect it and just slightly touching it causes it to flare up.

     

  • Offline in reply to GlowJoy

    Hi there, I know its been a while but was looking to find out how you got on with all this as Ive been through a similar process.

    Thanks and hope you are well. 

  • Offline in reply to Anifa

    Hi there, 

    Was just Wonder g if there is any update on this at all going through Something similar atm, hope you are well. 

    Thanks. 

  • Offline in reply to Amcn94

    Hello,

     

    im doing much better thank you for asking. I'm so sorry that you are going through this too. I pray you get answers soon and also get well soon too.

     

    So I found out that my lymph nodes and neck was swollen because I have an autoimmune disease called Hashimoto's thyroiditis. I had to get private blood tests and scans which took some of my savings but hey atleast I got some answers. 
    I also am intolerant to gluten and dairy which I didn't know I was. As soon as the doctor told me to cut them out majority of my symptoms had gone. I can't say I'm celiac as I haven't had the testing and I'm not sure I will. I also take oregano oil (oil of oregano) in water whenever I get ear infections. It seems to work better than antibiotics for me (antibiotics no longer work on me) so have managed to maintain the frequency of them. Unfortunately NHS were not helpful for me. I've just been constantly told I'm fine even when I've shown the results of my private scans and blood work. 

    Majority of the major symptoms like oversleeping for 15+ hours and the physical pain has gone. They do come back though if I don't look after myself or overwork which I think just comes with the condition.

    If you do get a thyroid panel done especially with NHS request for a full thyroid I've heard they don't test for antibodies which was what was most high on my test. 


    I hope this helps

  • Offline in reply to Anifa

    Hi Anifa, 

    Thought I would share my experiance as it might re-assure you a little.  I had terrible chest pains in June 2021 only a few weeks after my covid vaccine,  I went to hospital and they done some tests which were fine and carried out a chest x-Ray which I didnt hear anything about until January 2022 I got a letter to say I had a couple of swollen lymph nodes in my chest,  I went to see the consultant and have had blood tests which were fine and a CT scan which did show the enlarged nodes but they were only 1-2mm bigger than they should be so not very concerning, regardless I went for biopsies of the nodes which came back clear.  I also have 2 tiny nodes on my neck and a bigger one on my groin,  I had an ultrasound done on them which also showed no suspicious features.  The CT scan I had done also showed I have a slightly enlarged spleen and this is located at the bottom of the left rib cage area so could this be what is causing your pain here?  The consultant Said the spleem is Part of the lymphatic system so can swell along with nodes especially with some viral infections etc. I still dont know what exactly is causing my enlarged nodes but consultant did say that sometimes  they can swell with no concerning features. I dont know if mine was due to infection or possinly the covid vaccine. 

  • Offline in reply to Ezz2020

    Hey I was just wondering where yours painless and that doesn't mean cancer does it?

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