Long term lymph nodes/ itchy on neck and back/ swallowing issues

Hi I'm new here but I don't really know where else to go for some advice at this stage.

So last January I seen a emergency ENT because I was experiencing swallowing issues with an ear infection. The ent said all ok but they could see abit of inflammation so advised me to get a barium swallow. Because they never actually refered back to my doctor for the barium swallow and it was just a suggestion I had to pay for one privately myself. I was also told I had no ear infection or pain in my ear which after attending another emergency room was treated and giving antibiotics for a ear infection. This left me really dis hearted with the ent as I felt my appointment went nowhere.

After the results of my barium swallow I was sent to gastro for a scope which revealed gastritis and acid reflux, after a video fluroxifly it showed that my feeling of swallowing issues was the reflux pushing the food back up and making it sit higher up for longer but they said in gastro that it is uncommon for this to cause such bad swallowing issues. Just to clarify I was only drinking ensures for 3 months, it wasn't that I couldn't swallow, it was after I did it felt that I would choke for a second on the food or it would sit for ages before moving down. So before anymore tests were done gastro pushed the mental health card saying it could be a food disorder as well but when I seen the psychologist she said I needed more physical tests done.

Anyway fast-forward to July and I had lymph nodes all over my neck and a really itchy sensation all over my back and neck combined with random leg bruises. 3 different doctors told me it was normal and nothing to worry about, one of which said if I was fat I wouldn't feel them. Then finally I seen another doctor who again advised me to get a ultrasound but never sent for one so I had to pay privately. The Ultrasound showed multiple lymph nodes all over my thyroid but none big enough to biopsy. I got bloods done for my thyroid all came back normal. I seen a haemotologist for the bruises and they said the lymph nodes were not related and discharged me. I seen a ent at my hospital who did a scope for swallowing issues but wouldn't exam my lymph nodes because he said their separate issues.

I felt reassurance in seeing so many doctors and specialists so I forgot about it but last week they've changed. Some are bigger, there's more, and there down along and under my collar bone. I went to my doctor and was told to come back again and again until they sent me to emergency ent. Bear in mind these lymph nodes are now 5 months later and there still there along with the itchiness. (On my first private scan I was advised to get a scan 3 months later but no doctor would put in for me). The emergency ENT did a nasal scope and said all is fine based on my scan but I told her that was my first ever scan and that things have changed since than and that's why I'm here but she wouldn't listen. She said everyone has them and their normal. I asked her to feel them which she would bearly press or put pressure on my neck and kept saying she couldn't feel anything. I had to show her myself each one but this kinda made me feel uncomfortable because isn't it her job to find them. She said the itchiness has nothing to do with them.

Anyways I'm at a point where I dont know whether to be happy and accept all is ok or keep getting it checked because honestly to me it doesn't seem normal at all.

  • Hi Courts and welcome to the forum.

    I'm sorry to hear about everything you've been dealing with and that you don't feel like you've been listened to at your most recent ENT appointment.

    Not having answers for the cause of your symptoms must be very frustrating, but I hope it helps to know that you are not alone as so many of our members have been in this position too so they will definitely understand what you're going through and hopefully some of them will be along soon to offer their support and advice.

    You know your body better than anyone else Courts, and if your lymph nodes have got worse then there's no harm in going back to your GP to inform them of this and see what happens next.

    If it would help to talk things through with one of our cancer nurses, they're just a phone call away on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very understanding and will do all they can to support you.

    We're thinking of you Courts and hope you're able to get some much needed peace of mind over this soon.

    Kind regards,

    Steph, Cancer Chat Moderator