Hi do you have any updates at all? Were your lymph node swellings all on one side? I have bowel problems and lymph node swellings high up in the right of my neck and below right collar bone I'm trying to figure out wether it could be linked to the bowel problem. Keep getting told it'll be IBS due to my age (28) but I've lost 4 stone in 5 months and I'm very scared. Haven't had a colonoscopy 

Hi, no updates unfortunately, my doctors told me to call back in a month, so will call next week I think. All of my nodes in my neck are up on the right side only and are on the back of my neck running next to the top of the spine. In my groin they are up on both sides though. Have you had any bloods or a DRE done? I'm 20, so I also keep being dismissed which is very frustrating but if you feel something is wrong express concerns! I hope you get some insight as to what is wrong soon. What bowel symptoms do you have ?

That's good you have had blood tests and are getting an ultrasound! Hopefully the ultrasound will show what is wrong / normal nodes, as my doctors said high ESR can be a sign of infection. Are you still having bowel issues now? Hopefully it is nothing too serious, but it's good you should be getting answers soon. Keep me updated ! 

Thank you for the response I really appreciate it. I'm so so worried. I can't stop the weight and muscle loss which is the worst issue. The other symptoms I have I can deal with but the muscle loss is really scaring me and nobody seems to know what's up. 
 

I know I haven't got an infection, my CRP and ESR have been consistently raised for months since my investigations started. Yes my bowel issues have been ongoing for quite a while but changed probably at the beginning of the year when the weight loss started. But the swollen lymph nodes in my neck shouldn't be correlated to my bowel, it's all a bit confusing really. I would like them to start hacking bits off me for testing at this rate! Thank you I will let you know what happens with the scan . How large are your lymph nodes? I think you should get back in contact with your doctor if they're still swollen 

Yeah I understand, I've been worrying for months now, it's the worst feeling not knowing and no one taking you seriously. Do you think it could be the stress and worrying which is causing even more weight loss. I have suffered slight weight loss but I think it could be down to my worrying. My bowel issues also began at the end of January, so it's been a while too. I also thought that my nodes shouldn't be connected, but it seems so odd for there to be no infection or reason, I too don't think I've had an infection as I never felt any illness. My lymph nodes are only pea sized in my neck, but in my groin they're much bigger maybe 1cm or more, even though the doctor deemed them 'small'. I think the fact the groin lymph nodes are swollen is concerning because of the fact I've had pain with bowel movements for so long but no one seems to be worried. I hope your scan goes okay and I will definitely be ringing back soon and being more demanding, it's just hard to keep being so forward when people are not listening! 

Yeah I understand, I've been worrying for months now, it's the worst feeling not knowing and no one taking you seriously. Do you think it could be the stress and worrying which is causing even more weight loss. I have suffered slight weight loss but I think it could be down to my worrying. My bowel issues also began at the end of January, so it's been a while too. I also thought that my nodes shouldn't be connected, but it seems so odd for there to be no infection or reason, I too don't think I've had an infection as I never felt any illness. My lymph nodes are only pea sized in my neck, but in my groin they're much bigger maybe 1cm or more, even though the doctor deemed them 'small'. I think the fact the groin lymph nodes are swollen is concerning because of the fact I've had pain with bowel movements for so long but no one seems to be worried. I hope your scan goes okay and I will definitely be ringing back soon and being more demanding, it's just hard to keep being so forward when people are not listening! 

It's really difficult isn't it. No, the anxiety isn't causing such drastic weight loss. When the weight loss first started I ignored it and just tarred it down to stress but it continued rapidly even before I noticed something was seriously wrong. 
 

have you been referred to a gastroenterologist at all? I'm going to phone the gastroenterologist today and beg for a colonscopy, it can't be left any longer x

Deffo ask for a colonoscopy, im not saying this to worry you however. Have you looked in to inflmmatory bowel diseases like chrons/colitis because the symptoms are very similar to these inculding the weight loss problem. Lymph nodes can swell up in relation to any kind of inflmmation. I know its easier said that done but try not to google or convince your self of the worst x the only way to rule out inflmmatory bowel problems is for a colonoscopy x 

Thank you so much. Yes I'm hoping to God it's IBD because if not, I've got no hope. I'm in so much pain now and definitely need a colonscopy. The weight loss has been so drastic though. I've suffered from bowel problems for years so it's bizarre that it would speed up and cause such deliberating weight and muscle loss now. However, I did get referred to the gastroenterologist, and I wanted to change hospitals. Last week my initial gastroenterologist referral was cancelled and they didn't send another referral for the other hospital!! So now I'm stuck without a referral called today and they don't seem to be bothered and want to wait until Wednesday to speak to a doctor who hung up on me last time even though she wasn't the one who referred me. I'm calling back first thing in the morning and making sure they send the referral. I can't believe they would cancel one without sending another and now for some bizarre reason aren't re-sending it. I have been left for so long I'm petrified 

I can understand what you mean. I hope it is IBD for you :) even though thats not nice either. Ive heard that stress can trigger these kind of conditions and at times the symptoms can appear out of nowhere. I was given a diagnosis of severe ibs however had inflmmation in part of my bowel which is odd. Got a letter a month or two ago that told me i have been discharged from gastro without any treatment plan or referal to the ibs specalist. Its sooo frustrating. Im not 100% convinced it is irritable bowel with the evidence of inflmmation. But what do i know, as far as they are concerned i have answers.... this is despite continious abdominal pain in my lower right side. I hope you get answers soon x 

Wow that's insane. Did you have any testing? Thank you I hope so too x

Yeah so i had an endoscopy found reflux/gastritis and a hiatal hernia. Colonoscopy found inflammed ilium. Feacal calprotectin showed some inflmmation in a feacl sample and my CRP went up to 49 when its suppose to be around 2-4 haha but still its apparently Just IBS so 3 tests showed some inflammation but when i had a video capsule camera that went through my whole digestive system they said its just irritation :/ of they won't agree to a colonoscopy maybe ask for a video capsule endoscopy as its not as invasive x its a pill sized camera that you wear a reciever belt with for 8 hours x 

Oh bless you, sounds like you've been through the mill! But I'm glad they were thorough with their investigations. My CRP isn't even as high as that. It averages at 8-10, has been 15 once but haven't seen higher during my bloods. Thank you for the advice I appreciate it x

Hi 

[@Sammyg2010]‍ [@KrissyRawrz]‍ any updates? I have phoned the doctors today again and have phone consultation tomorrow. Not feeling positive anything will come of this but I have started getting pain under my right rib cage which is also scaring me slightly. The doctors seemed reluctant to even give telephone consultation so I am concerned they think I am just a pest.

Hi everyone, 
Spoke to the doctors this morning about lymph nodes again and also the rib cage problem. One of my ribs seems to be protruding more and quite sensitive. She said if the nodes are still moveable and haven't grown and the pain in ribs isn't worsening with movement/breathing it's unlikely to be anything too concerning. However she said she will refer me for a chest x-ray! Apparently there is still no guarantee I will get one due to Covid-19, but I am feeling more positive that I may get to the bottom of things sooner. 
Hope you guys are well

Hi, sorry for the delay been at work and found a doctor who was actually listening to me. I had an appointment face to face about my jaw/neck lump, my persistant fevers and generally feeling drained. She is going to run more bloods and has referred me to ENT under the 2 week wait. Her face said 'why the hell hasnt someone picked up and acted on the tempreture issues for 6 months?!?!?!' I think she was quite shocked that i had been fobbed off so long and in 4 weeks noone had been bothered to physically have a look at my jaw/neck area! Glad to hear that yours are doing something too x