Swollen lymph nodes for almost two years

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 

Parents
  • Obviously I'm not glad that either of us are in this position, but it's so nice to hear that someone else has suffered 1 year+! All I see is people posting that their nodes have been swollen for a few weeks, mines been swollen since February 2018! I'm glad I'm not alone! I had to make countless gp appts. Saw a different one each time, probably didn't help as had to keep re-explaining the situation. I supposedly had ''tonsilitis' back in Feb, even though I was well in myself. I had one swollen tonsil, and a large node on the opposite side of my neck despite feeling well, Went back after told would improve in a few weeks, and other symptoms started... Tiredness, achey neck, feeling hot etc. Got told still tonsillitis. Went 2 other times, pretty much a waste of time. Until I ended up getting to see my actual GP a month ago, by this point I had a few more nodes flare up a little (not as bad as the huge neck one though), but wasn't concerned about anything I had said, until he asked how long this had been going on and I said a year, he seemed shocked. And put in an urgent referral. I have my first appt. with ENT next Monday. I'm sure they thought I was a hypochondriac too. I used to go in all the time with my little boy saying something was wrong from when he was 2 weeks old. Took him in countless times and they though I was paranoid. Took 9 months for them I investigate (think because they got fed up with me) and he ended up being diagnosed with an airway defect! I'm sure because I went in so often with him that they thought I just enjoyed visits to the doctors. But thing is, I was right to be persistent! I have no idea whether I have lymphoma or any other cancer but I know something is wrong, maybe minor, maybe major but something is wrong with me. So hard to get people to listen. We know our bodies. Hope you start getting heard soon! Horrible isn't it... 

  • 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!

Reply
  • 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!

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