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
  • Hi hope everyone is okay on here

    I've had a lymph node behind my ear since early December, since then it has got bigger and noticed another on the other side and are painless, I had blood tests and chest x ray which came back fine, and saw ENT who did an untlrasound who said things look normal.

    however I'm still having other symptoms which I mentioned to ENT like itching, night sweats, random bone pain

    I'm unsure of what to do next as they said it looked fine, but I just can't help feeling that something is wrong, if anyone has any similar symptoms I'd be interested to hear x

  • 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! 

Reply Children
  • 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.

     

  • Hi Bartholemew, how are you feeling today? I'm  interested in your health story as it is similar to mine did you get any better yourself or did you get a diagnosis?