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,

     

    I know this is a very late reply, I was just googling swollen lymph nodes as mines been swollen for 10 months now, and came across your post, I was just wondering if you ever got to the bottom of why you were feeling so poorly and if you're ok now?

  • Hi there, I just got the notification for this post and had to make a new account, I'm the original poster. I was eventually discharged from haematology after being told there was a 99% chance I didn't have lymphoma which I wasn't really happy about (I would rather have been told it definitely wasn't lymphoma). However I'm now waiting on a referral to a rheumatologist for a possible lupus diagnosis as this would also explain my symptoms. My symptoms have just gotten worse, especially the fatigue so my GP has also suggested maybe going back to haematology to get a biopsy but I have no idea when this might be. I would recommend you go straight to your GP as of course it could be something completely different like how I was told I might have lupus or some other kind of autoimmune illness, but it's always better to be safe! I've found that this message board brought me a lot of comfort while I was being passed around between doctors. I hope you can get to the bottom of your symptoms, I know how stressful it is and I hope you won't have to wait as long as I did!

  • Hi, I found this discussion googling my symptoms, I live in ireland and am in and out of hospital having bloods and scans, initially last December 2020 I found a lump in my underarm, and with a history of breast cancer I gor it checked, thankfully after a mammogram and biopsy no breast cancer, then referred to a infectious diseases consultant, and up to now been negative for everything, including TB! BUT my symptoms are worsening, night sweats, itchy skin, headaches, nausea, extreme fatigue, lymph nodes on both sides in neck and underarm are large, sometimes sore more often not, I'm at my wits end with it all 

Reply
  • Hi, I found this discussion googling my symptoms, I live in ireland and am in and out of hospital having bloods and scans, initially last December 2020 I found a lump in my underarm, and with a history of breast cancer I gor it checked, thankfully after a mammogram and biopsy no breast cancer, then referred to a infectious diseases consultant, and up to now been negative for everything, including TB! BUT my symptoms are worsening, night sweats, itchy skin, headaches, nausea, extreme fatigue, lymph nodes on both sides in neck and underarm are large, sometimes sore more often not, I'm at my wits end with it all 

Children
  • Hi, if you are worried I'd go and see your doctor, it may be just an infection but I would defo get it checked out to put your mind at ease. Doctors should be able to tell and if they are in any doubt they will refer you to ENT first of all. A biopsy is the next step as this is the only way to tell if it's lymphoma. If it's positive you will be referred to a Haematologist. The lymph nodes don't give you any pain so that could be a good sign for you. Best wishes and good luck x