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2 Mar 2019 17:05

Swollen lymph nodes for almost two years

2 Mar 2019 17:05

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 

2 Mar 2019 19:36

Swollen lymph nodes for almost two years

2 Mar 2019 19:36 in response to Eva6

Hi, Eva, sorry to hear about your predicament, it can’t be easy for you. The good thing is the ultrasound didn’t show anything so there was no point in doing a biopsy. I’ve got lymphoma and had a painless lump in neck, armpit and at each side of my lungs. I had drenching sweats at night. I didn’t have any of the symptoms you have. The lymph nodes at my lungs were very enlarged and only then they made the decision to give me treatment. . A lot of people with lymphoma are put on watch and wait and can be on it for years without treatment. If it’s a slow growing lymphoma they don’t believe the treatment would benefit you but they do check you every few months. If I were you I’d go back to your GP and tell him you are not coping. At least you are on the system and they will keep an eye on you. Take care x

3 Mar 2019 23:05

Swollen lymph nodes for almost two years

3 Mar 2019 23:05 in response to Eva6

Obviously I'm not glad that either of us are in this position, but it's so nice to hear that someone else has suffered 1 year+! All I see is people posting that their nodes have been swollen for a few weeks, mines been swollen since February 2018! I'm glad I'm not alone! I had to make countless gp appts. Saw a different one each time, probably didn't help as had to keep re-explaining the situation. I supposedly had ''tonsilitis' back in Feb, even though I was well in myself. I had one swollen tonsil, and a large node on the opposite side of my neck despite feeling well, Went back after told would improve in a few weeks, and other symptoms started... Tiredness, achey neck, feeling hot etc. Got told still tonsillitis. Went 2 other times, pretty much a waste of time. Until I ended up getting to see my actual GP a month ago, by this point I had a few more nodes flare up a little (not as bad as the huge neck one though), but wasn't concerned about anything I had said, until he asked how long this had been going on and I said a year, he seemed shocked. And put in an urgent referral. I have my first appt. with ENT next Monday. I'm sure they thought I was a hypochondriac too. I used to go in all the time with my little boy saying something was wrong from when he was 2 weeks old. Took him in countless times and they though I was paranoid. Took 9 months for them I investigate (think because they got fed up with me) and he ended up being diagnosed with an airway defect! I'm sure because I went in so often with him that they thought I just enjoyed visits to the doctors. But thing is, I was right to be persistent! I have no idea whether I have lymphoma or any other cancer but I know something is wrong, maybe minor, maybe major but something is wrong with me. So hard to get people to listen. We know our bodies. Hope you start getting heard soon! Horrible isn't it... 

12 Oct 2020 19:48

Swollen lymph nodes for almost two years

12 Oct 2020 19:48 in response to Eva6

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?

12 Oct 2020 20:12

Swollen lymph nodes for almost two years

12 Oct 2020 20:12 in response to cath2991

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!

12 Oct 2020 20:16

Swollen lymph nodes for almost two years

12 Oct 2020 20:16 in response to Chonie939

Hi there, I've returned to this board after over a year and just saw your reply!!! I hope you got to the bottom of your symptoms and you were able to be treated well! I was eventually discharged from my haematologist but without a definite answer, I'm waiting on an appointment with a rheumatologist to see if my symptoms are auto immune related but I'm still waiting for a definite answer it's not lymphoma! I'm still really frustrated and it's comforting to know I'm not alone in this!!! Hope you're doing well

12 Oct 2020 20:20

Swollen lymph nodes for almost two years

12 Oct 2020 20:20 in response to scones

Thank you so much for your reply. I'm still not quite at an exact diagnosis but it's more likely that I have lupus than lymphoma. it's still frustrating because I haven't been given an official answer even two years later but I'm a lot more forward with doctors now as I am sick of being messed about. Thanks so much, I hope you're doing well

21 Nov 2020 10:33

Swollen lymph nodes for almost two years

21 Nov 2020 10:33 in response to Eva13

Hi, I hope you are well at the moment. I have had the exact same symptoms since October last year and am still going round in circles trying to find out what is wrong but... I am a researcher so I have an idea that is currently being investigated. I started with painful 'lumps' in my left and right groin last year along with sweats, pain in my lower ribs on the right side, right side ear pain, vomiting and severe indigestion. I too was sent to haematology and didn't have lymphoma and also the radiologist wouldn't biopsy because the lymph nodes all looked structurally sound. I fought for a CT scan and found that I have swollen lymph nodes throughout my body. I was also sent to rheumatology but I didn't have lupus so discharged. I have been studying my own symptoms for the past year and a random news article pointed me in the direction of endometriosis. I am 40 years old and had a hysterectomy due to endometriosis when I was 36. I thought that as my womb had gone, so too would my endometriosis. Evidently not! I am now undergoing investigations for post-hysterectomy endometriosis and hopefully this one 'feels' right. Could you do me a favour and please keep updating and I will do the same? It just seems that there are other people with these symptoms and it seems that whatever condition(s) are affecting us they are hard to diagnose and someone should know that. I too have the awful tiredness forgot to say... it has been a painful and depressing year. Anyway, chin up - at least we are now 2 and not suffering alone.

22 Nov 2020 21:29

Swollen lymph nodes for almost two years

22 Nov 2020 21:29 in response to sara9930

Hi Sara, I hope your feeling okay!
I came to this forum because I have 2 painless lumps on the left side of my neck which I think are my lymphnodes. I went to the doctors in may, to which i was shrugged away and told it was just swollen glands. I then returned 2 weeks ago to the GP nurse to which she said they were very unusual. I have now been referred for a scan to which I am waiting for the appointment for. My bloods are all clear and I don't have a temperature but I have had these lumps for nearly a year now. On a seperate note I have been going back and forth to the GP with pain in my lower abdomen. It was originally thought to be polysistic ovaries however with normal hormone bloods and a clear ultrasound scan it cannot be this. We are now going down the route of endometriosis and I am on a very long waiting list for some form of scan to determine if this is the cause. I never thought about linking the two together but as you have mentioned something about this, could this be the cause of my swollen lymph nodes? What did your doctor say, is there a link between the two? Also how was your diagnosis of endometriosis as it seems like a long process? 
 

23 Dec 2020 19:18

Swollen lymph nodes for almost two years

23 Dec 2020 19:18 in response to Eva6

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

11 Jan 2021 00:22

Swollen lymph nodes for almost two years

11 Jan 2021 00:22 in response to Yasir1234

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 

11 Jan 2021 08:32

Swollen lymph nodes for almost two years

11 Jan 2021 08:32 in response to lp21812021

This is totally fine, Lymph nodes are usually harmless and benign as long as you can move them and they're not growing or getting harder you should be fine, this could be due to an infection or a cold you may have suffered, I had the same problems when I was 24 and now I am 68, hope you certainly feel better.

11 Jan 2021 15:59

Swollen lymph nodes for almost two years

11 Jan 2021 15:59 in response to lp21812021

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

13 Jan 2021 08:22

Swollen lymph nodes for almost two years

13 Jan 2021 08:22 in response to its85me

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 :) 

14 Jan 2021 02:26

Swollen lymph nodes for almost two years

14 Jan 2021 02:26 in response to Ruby16

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