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 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

  • Hi did you  ever get to bottom of this it's exactly same symptoms as I have had for months

  • Hi,

    Nope, Ive had Ultrasound, CT Scan & MRI. All come back okay, although they didnt scan the full area, its been on going and my symptoms are getting worse. Its been 14 months now without a diagnosis. My doctors are very dismissive and put it down to health anxiety which is complete ***.

    I will continue to update when i receieve news.

  • Hi Mark ,

     

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

  • :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

     

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