Thank you so much for replying SunshineEm, really appreciate it :) Great news that you're okay! It is really reasuring to hear that yours have turned out to be nothing sinister, but it must have been a very worrying time for you.

They are fairly small, I'd say mostly around 1cm or just over with a couple of slightly larger ones maybe 1.5-2cm. They are non tender and feel quite firm.  I've done a lot of goggling (bad idea!) and I've not managed to find many people at all with such widespread nodes, so it was good to read your posts.

My GP appointment is on Tuesday so I'll report back after that.

Hi Becky,

2 years ago I had enlarged nodes in my neck, armpits and groin and now they are enlarged in my neck and right armpit (as has been the case for 10 weeks or so). In both cases, they have been tender and quite small, however. My main concern is continuing night sweats and slight deterioration in my eyesight (I’m on the way to the opticians now for a dilation test.......travelling by bus!).

Have you had any other symptoms beyond the node swelling?

I wish you all the best in getting sorted and I’m glad to hear Scotland’s reassuring news. Fingers crossed that proves universal for us all.

Dave

Hi Dave, sorry that you’re experiencing this too. How did your eye test go?

I’ve had bad headaches and eye pain and muscle twitching for a couple of months before I noticed the nodes were raised - no idea if it’s related or not though and is slightly better now. I’m quite achy and feel a little more bloated than usual - quite vague and mild though so again, hard to know if there’s any connection.

my nodes aren’t sore- I think that’s a positive if yours are as more likely to indicate an infection? Did you ever find out what was caused your swollen nodes previously? Did the eventually go down or have the stayed up since then?

Hi Becky,

Like you, I have an ENT appointment coming up (a follow up in my case) and I think I might ask for a head and neck scan to make doubly sure my eyesight issues and tender nodes aren’t linked. I also have very mild tinnitus noticeable more at night, so I’m wondering what’s going on! The dilation test went OK, but my prescription has deteriorated a fair bit over 12 months and now it looks like I’ll need more than just reading / VDU glasses.......hopefully it’s just a result of me approaching 50!

My original node inflammation subsided over a couple of months back in spring 2017, but this year’s ‘fun’ is still on-going although now slightly less severe than it was. 

Being an engineer by trade, it is not in my nature to just shrug my shoulders and assume it’s a viral infection. I want to know root cause and why it’s recurring (if related to my 2017 issues). It seems to me that, if it’s confirmed there’s nothing sinister going on in my head or neck, I must have some sort of autoimmune disorder, and if so, I will want this confirmed and guidance on how to keep it in check. I’ve been below par for weeks and weeks now and I need to hurry up and get well so that I can get running and cycling again - otherwise I’ll need a new wardrobe at this rate!

Hi 

After 2weeks of waiting for my referral to come from the soft tissue(sarcoma) team i have decided to go private with the doc the nhs had referred me to. Then got a phone call to say they had a MDT meeting and the orthopedic surgeon i had been referred to is happy to see me in the private clinic. So surely if it was anything sinister i would be advised to see another doc. Hope u all well xxx so my app is in thursday in private clinic. Cxx

I hope everything goes well at your appt in Thursday Nicci, fingers crossed for good news for you x 

I had my endoscopy yesterday, I hated it as expected but got through. The nurse was lovely and was a massive help keeping me calm. She was amazing. They looked at my oesophagus, stomach and small bowel and all is "pristine" they also tested for H Pylori which was negative. Whilst I'm obviously relieved they didn't find anything sinister (or anything at all!) it does leave me wondering why I'm still suffering with daily nausea and indigestion. My glands are all still up and I'm back at the GP on Tuesday. So far so good for me  but a bit like Dave I'm just keen for some answers as I'm definitely not feeling my usual self and no one seems to have any idea as to why.

Thinking of everyone x 

Hi Littleoldme,

Well done for going through it and I am pleased to hear that this phase of the search has not revealed any problems. Did they say what could next be done or is it a case of going back to a GP to discuss the next step?

I guess they could CT scan your abdomen or perform a colonoscopy (trust me, the worst bit of that is actually the laxative prep the day before!).

I’m looking forward to Monday pm when I get to ask the ENT Specialist ‘what next then?’. I suspect the answer will be an MRI of my neck and head.

Dave

Dave, totally with you there! I’m a very logical person (bit of a control freak too!) so in my mind they must be swollen for some reason, I find it hard to accept when my gp just says not to worry about it. I’d like to know and understand the reasons, even if it is nothing to worry about. Hope your ent appointment goes well.

Thanks Dave. Back to my GP for next steps if they feel there are any to be taken. I already have an appt on Tuesday so I will discuss my gastric issues then too. Hopefully keep moving forward, however slowly. Did you get your ENT appt for your glands? I was referred for an ultrasound and they said a CT would be next if they didn't settle, ENT was never mentioned, perhaps because the worst of my gland swellings are at my collar bone. I hope the appt goes well for you and you get some answers. 

Hi Becky, 

I have had an Ultrasound for my glands, the consultant said when he did it he didn't see anything of concern. My gland above my right collar bone is very large, easily visible by eye without having to look for it, but he appeared completely unconcerned. He did say a CT would be next if my GP felt it was necessary, my GP called a few days after my Ultrasound and asked to see me so I have that appt on Tuesday. Not sure what to expect! x