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'm super scared I about 6-7 lymph nodes in my neck some of them are small and some of them are long I'm really terrified and suffer from health anxiety, I've had these for about 6-7years please can anyone help me

  • Hello, I have just seen this from reading through posts to try and help to comfort myself. From feb 2020 I started to have a swollen feeling in my glands in my neck and a general unwell feeling which was on and off. I found a tiny lump deep in the back of my neck and went to the doctors in which she quickly felt and said this is just a gland. In March I started getting upper back pain which occurs when I tilt my head forward and backward mainly in the upper right part but sometimes left too which also is felt in bed sometimes. This pain was on and off and I still have it now. I went to an osteopath as thought it may be due to posture issues but it didn't seem to help. I then found a few moveable lumps deep in my armpits too so I contacted my GP and Went in for an app. The GP didn't really listen to my issues and just sent me for a blood test which came back saying I had a B12 deficiency. I still had these lumps so went back for another full blood count and it came back clear. I found another small moveable lump in my neck above my coller bone on the left side and can't stop worrying so they reffered me for a chest X-ray which I have had but not had the results back yet. I am so stressed and don't know what this is? If anyone has had any similar experiences please let me know 

  • Hi. I have the same problem recently. Found a moveable lump above my collarbone and I am bricking it to know what it is. I've got severe health anxiety and it is stressing me out! My neck muscles also twitch and my neck in general is so painful! Can't help but to think the worst with health anxiety! When are getting your results back? I am a slim guy so I can feel most of my nodes but the one above my collarbone is worrying me

  • Hello! I have had 5 swollen lymph nodes for a while now! I have two under my jaw, 1 on either side of my neck and 1 in my groin! I have had blood tests which came back clear so in theory I'm fine. I'm still a ball of stress because I have health anxiety and every time I feel a tiny bit unwell I immediately assume I'm going to die. I'm only 17 and the doctor told me it's completely fine and actually took me seriously, I of course nearly passed out when he took my blood tho . But more often than not swollen lymph  nodes are completely harmless and just stayed after they fought an infection. I am currently having some suspected problems with a wisdom took and am wondering could this be the cause? It's been attempting to come down for months, but barely broke the gums and now it's making it sore to open my mouth and I realise my jaw is constantly clenched. I am aware that the clenching is most likely my anxiety.      This is a trying time for everyone and especially for people with mental health issues! It's difficult in every way you can think, we don't have our regular routines or support systems, we don't have distractions either. I hope you take comfort in knowing how many minor issues can cause swollen lymph nodes. Wish you luck :) 

  • Hello, I am 18 and I have loads of swollen lymph nodes too I have them in my neck under my armpits and one above my collar bone. Similarly to you I had two blood tests done and both came back fine (I ended up fainting with one) but I also have upper back pain which has been here for ages now. I have had a chest X-ray and it's been 2 weeks and still haven't received the results. I feel like it's never ending and I just want to know if somethings wrong. Are they doing anything else about yours or are they stopping from the blood tests? Hope you are okay 

  • Hello, I hope you are okay ... I have the same and it's above my left side of coller bone and movable have you seen your doctor at all? It's been 2 weeks and I still haven't got my results back 

  • The doctor said I need no further tests because I'm fine otherwise that's the only thing wrong! I'm blaming them on my wisdom tooth, because the one under my jaw is on the side where my wisdom tooth is coming down! I hope your X-rays come back clear and everything's fine. I'm very prone to cysts anyways so the ones in my neck could simply be that! I'm not too concerned anymore as he's pretty confident that I'm ok! If I start to have any other health issues like pain or anything like that I will ask him to investigate further. They're up for a good while now a couple of months but still move and are relatively soft, which is a good thing. I wish you luck and hope your X-rays come back clear! I know it's silly but try not to be too worried, I'm sure it's something minor ! :)

  • Hi,

    I have also had similar symptoms to you and have a swollen lymph node for around a year?

     

    Did you get the results from your xray are you any better

  • Hiya, 

    my X-ray came back all fine so I was referred to a haematologist appointment where she didn't seem too concerned and said that the lumps felt like muscle parts  and sent for a CT scan to check for sure and to check about back pain. I am still waiting on CT results it's been 3 weeks. The less I have been feeling them and thinking about it the less big they feel and less I've been worrying. Have you seen anyone about yours and is it only one lump? 

  • Hi,

    Saw GP year ago but they are not really interested my son has one as well in same place on his neck (he was seen by doctor 6 months ago and again told it was nothing and if it didnt get bigger it was fine) 

    I am glad you are feeling better and your xray was ok, I am sure your CT will be fine too, 

    Thank you for posting here I know sometimes things are not positive but it helps to hear from others who have gone through the same and are ok.

    Take care of yourself

     

  • So yours never went down? Or you had a problem with them raised for a while when you were younger? 

  • Hi,

    Having exactly the same symtoms as yourself for the past 7-8 months. I havnt been vacinated yet (some people think and rightfully so that vaccine can cause swelling). Started off as swelling in my Jaw, swollen nodes and eventually tooth pain, ended up going Dentist first thinking it was a dental problem, however i had 3 wisdom teeth out and 3 months later i still had the same swelling in my Jaw.

    Symtoms

    - Swollen Nodes (Left Side Jaw)

    - Swollen Neck (Left Side)

    - Sore Throat (On and Off)

    - Lump in Throat (or the feeling of)

    - Armpit and Groin Pain

    - Shoulder and Neck Tightness

    - Pins & Needles or Tingling Feeling in Face and Neck

    I've since seen my GP and got reffered to ENT Head and Neck Specialist, who didnt seem too concered but im booked in for an Ultrasound. I also had a blood test and my B12 was also below the recommended.

    Im 31 years old, smoked since i was 14 (quit 2 weeks ago) so you can imagine im just thinking cancer.

    Let me know what results you get, your symtoms closly match mine.

    Mark

Reply
  • Hi,

    Having exactly the same symtoms as yourself for the past 7-8 months. I havnt been vacinated yet (some people think and rightfully so that vaccine can cause swelling). Started off as swelling in my Jaw, swollen nodes and eventually tooth pain, ended up going Dentist first thinking it was a dental problem, however i had 3 wisdom teeth out and 3 months later i still had the same swelling in my Jaw.

    Symtoms

    - Swollen Nodes (Left Side Jaw)

    - Swollen Neck (Left Side)

    - Sore Throat (On and Off)

    - Lump in Throat (or the feeling of)

    - Armpit and Groin Pain

    - Shoulder and Neck Tightness

    - Pins & Needles or Tingling Feeling in Face and Neck

    I've since seen my GP and got reffered to ENT Head and Neck Specialist, who didnt seem too concered but im booked in for an Ultrasound. I also had a blood test and my B12 was also below the recommended.

    Im 31 years old, smoked since i was 14 (quit 2 weeks ago) so you can imagine im just thinking cancer.

    Let me know what results you get, your symtoms closly match mine.

    Mark

Children