Swollen Lymph Nodes / Mono
Posted , 8 users are following.
My story...
I was at work one afternoon a month ago & noticed a lump on my neck - I went to the doctors the following day and had an ultrasound & a full blood count. The ultrasound showed a few swollen lymph nodes in my neck. That night I went to the gym and another lump popped up.
I went to see an ENT for a follow up and he said it was the start of a throat infection and gave me antibiotics. The antibiotics did nothing and over the course of that week my symptoms got worse. One tonsil was very swollen, the other coated in white. I was having night sweats, had an on/off mild fever & I was having upper left abdominal pain & generally felt awful. My throat was never sore. I also had some heart palpitations, dizzy spells and my chest generally felt uncomfortable. I also was experiencing chronic fatigue.
I went back to the ENT and requested a EBV Test. This came back positive and I was sent to see an infectious diseases doctor. He went through my symptoms, felt my spleen and said it was enlarged. He agreed on the Mono diagnosis. I had a chest X-ray which came back clear and 3 days later a ultrasound on my abdomon which by that point the spleen pain had gone and all results came back normal.
I had a liver function test which was very high and my bloods were retested and monocytes and lymphocytes were both very high. My whole body ached.
After nearly 2 weeks of very healthy eating and at home relaxing, my symptoms gradually decreased.
During this period I was very worried about lymphoma and Lukeimia - I went to see a number of doctors who all agreed on the mono diagnosis.
My bloods were re tested and the liver function returned to normal after about 3 weeks and my lymphocytes are still slightly high at 51%. I have been given iron tablets for 6 months as my iron levels were slightly Low. My blood was looked at and the hemotoglisgt said there are reactive lymphocyte cells. Apart from that the blood looks normal.
I am still incredibly anxious as 4 weeks on my lymph nodes are still enlarged. After a further ultrasound there are a number of lumps in my neck & a couple under my arms & small ones in my groin.
My chest is also still feeling uncomfortable & the fatigue is lingering, but not as bad as it was two weeks ago.
I went to see a surgeon who said he would remove & test one of the lymph nodes to rule any bad things out, but I am extreamly nervous as this will involve general anesthetic.
Does anyone relate to my symptoms? Do you think I should have the biopsy in 2 weeks time or leave it for now?
I was thinking maybe to have bloods done again in 2 weeks and have an ultrasound on the nodes & then decide from there.
Any tips or advise would be great!
0 likes, 23 replies
diane83287 kirsty60141
Posted
Hi Kirsty,its all part and parcel of the nasty virus im afraid,it takes a long long time to recover from,im 14 months in with it and a lot of people on here have had it for a while,it affects the glands all over your body too,hence the ones in your groin and armpit,personally if it was me I wouldn't have the biopsy as like your doctor said its the mono,it really causes some awful symptoms and makes you very unwell for a long time,especially the fatigue,that can last a while,try and get as much rest as you can and good vitamins,but I wouldn't worry about it being anything else other than mono,the virus actually causes anxiety too,hope you start to feel better soon.....
kirsty60141 diane83287
Posted
Thank you for your message Diane. I am trying to keep positive & think I will stock up on the vitamins and monitor for a while before taking up the biopsy. I just wish I could wake up and for things to be normal again! Do you recommend any vitamins, I am currently taking daily 1000mg vitamin c, iron & evening primrose...any recommendations which helped you would be great
ryan98291 kirsty60141
Posted
Hey Kirsty!
I'm really sorry this is happening to you. Glandular fever can be really tough and stressful and you will get through it.
To put your mind at ease I'll tell you my story as it seems similar to yours in some aspects.
I was diagnosed with glandular in January at which time I was very ill incredibly nauseated, had hepatitis, an enlarged spleen, fatigue and cognitive issues. Also enlarged lymph nodes on my neck along with whole body rashes (weird right?). I got it real bad.
Before my diagnosis I too was convinced I had some sort of cancer and was freaking out. I had ultrasounds and every blood test known to man etc. Anyway it took me agessss but finally I started to feel better. Maybe 2 months later. Even then I wasn't fully recovered. University was tough.
Then 1 month ago I got real ill again. The lymph node was up in my neck still after 6 months, I felt like I was dying and I thought, no I really do have cancer. Anyway I had every test in the book all the way to a full body CT and nothing came up. The doctor put it down to post viral syndrome which is a reccurance of symptoms from a virus not explainable with any medical tests.
Long story short I'm on the mend again but feel like I did back in January which sucks. I still have the lymph node in my neck though! And the doctors know it isn't anything sinister!
I thought because all the websites said my lymph nodes must be down that it had to be cancer but here it is still up, 9 months later. I just want you to know websites and text books just can't explain the wide variety of symptoms and presentations of glandular fever and just how sick it makes you and I can assure you that you don't have any sinister pathology!
Only advice I haven is rest as much a second possible! My post viral syndrome came 8 months after diagnosis when I started pushing myself. Listen to your body and you will very slowly feel better!
A little piece of info as well, women and girls with glandular are far more likely to present with fatigue and tiredness than boys and men, sometimes 24 months later so fatigue is very common.
One last thing, it seems like you are requesting a lot of tests. On the note of the biopsy ultrasound is interpreted by radiologists who are some of the most qualified medical professionals in the world. They make the call on whether or not you need a biopsy based on ultrasound results. If they didn't request you needed one following ultrasound of lymph nodes, don't get one. General anaesthetic comes with its own risks and costs. Worth waiting. If in a few months your lymph nodes remain and you're still nervous consult your doctor.
I really, really hope you start to feel better soon, I completely understand where you are right now as I'm a real worrier and I am a big fan of doctor google. Good work on making it this far!
Regards, Ryan
kirsty60141 ryan98291
Posted
ryan98291 kirsty60141
Posted
Only advice I have is to rest! Sounds obvious but often people start to feel better and because they feel better they start pushing themselves. The key thing is when you feel better to rest more! I won't lie i've missed out on a lot this year due to my glandular as I often had to rest or couldn't enjoy it fully because I felt sick but it's a small price to pay for feeling better.
I never took any vitamins or anything, just ate healthy. I have noticed since I got mono that I get colds way more easily. I must have had 7 or 8 this year where normally I get one. I recommend echinacea and vitamin B if anything. At my uni I have access to databases and high quality research shows it is proven to work in prevention of colds. If I had have known this I would have taken it as now i believe the viruses I got while fighting mono set back my recovery. And with vitamin B people swear by it for fatigue. As fatigue wasn't my biggest issue I never worried with it.
Good luck and keep us posted!
craig07920 ryan98291
Posted
Hey Ryan,
Definitely some really good advice, it's natural when you feel a bit better or having a good day or week to want to do more and push yourself, just need to take things at a steady and gradual pace even when feeling a bit stronger - remembering that in the fullness of time full body resilience comes back and recovery does happen.
Hoping you are feeling much better now, yeah I totally agree about B complex - I take a B100 complex per day (don't panic if this makes your pee go bright yellow, it's normal!) and echinicea also great. I have found oregano to be a really good and powerful one too.
Thinking about you and hoping and praying things are moving in the right direction for you - believing that God is the great healer.
Craig
Mono_too kirsty60141
Posted
This is very normal with the virus, I had enlarged glands for months, I did not begin to fully recover for a full year, I am also in my fifties so it takes longer. Just rest as much as possible and eventually your body gets a handle on this virus.
kirsty60141 Mono_too
Posted
Thank you for your message, it makes me feel stronger knowing I am not the only one with ongoing symptoms. My friends & family all think I am going crazy & I really am driving myself mad with all of these awful thoughts. I’m glad to hear you are on the road to recovery!
40with.gf. Mono_too
Posted
caroline xx
Mono_too 40with.gf.
Posted
Doing pretty well. my daughter is still struggling, but i am about 90 percent recovered. My daughter bought a home and I am helping with the lighter chores so that is progress,
How are you doing?
40with.gf. Mono_too
Posted
Hi mono,
Its great to be in contact with you again, I'd say I'm about 99% recovered, I do normal stuff now and days out etc, just sometimes still I get fatigued, so it hasn't completely gone but I still feel so much more normal that I did in year one, thank god. I ended up losing my job, so now I've enrolled at college and start next week.
That's great you are able to help your daughter, I'm glad you're doing ok. Sounds youre like me and nearly there too. It seems like an awful long time since we got this virus. Sending your daughter lots of well wishes too.
caroline xx
Mono_too 40with.gf.
Posted
Hi Caroline,
I am glad you are recovered too. I was really beginning to wonder if I would ever get better, I still check in here to help and encourage those people who like us wonder if they will ever recover.
Here's to better day for all of us. I am forever grateful to Craig and everyone on this forum who helped and encouraged me when I was at my lowest point
40with.gf. Mono_too
Posted
Hi mono, you wonder if you're ever going to get better as it Just goes on for so long and you never know when that end date is going to come. That's the worst part. Not knowing.
i mean, when you get normal ill, 2 weeks seems like forever, then you just recover and back to normal.... This virus just doesn't work like that. It's so hard going. I wish specialists and doctors could reassure us more. It's normal to have it this long and no you won't be left like this forever. As that's what's all crossed our minds at some point.
keep calm and carry on!!!
xx
diane83287 40with.gf.
Posted
Oh I know that feeling 40with,im 59 and fell ill last June so around 14 months now,i already had ME/CFS before gf,had that about 15 years,but ive never been this ill in my life before as I have with this,its nasty,i actually have felt at times like I was on my way out,im on with my 4th relapse with it since then,and each relapse knocks me off my feet and puts me in bed for at least 6 weeks,then begins the slow process of trying to get back on my feet and building myself up again,but never feeling right,that lasts for a few weeks and then bang I come down with it all over again and I feel as ill as I did in the beginning each time,its so frustrating and I really don't feel as though my body can go through another bout of this,i cant work because of the ME/CFS so luckily I have time to rest whenever I want and im on my own as hubby died so don't have any help,its been a nightmare,the worst year of my life,just wondering how long these relapses are going to go on for and will I ever feel like I did the day before I was struck with it,glad to see you are feeling much better so that gives me hope,but wondering if anyone else had really bad relapses with it as frequent and as severe as im having them and if its normal ?
dominika20801 kirsty60141
Posted
This virus causes some gnarly anxiety but it’s just that and not a more serious problem. Like others have said before, many have symptoms like swollen nodes, fatigue, sore throat, etc. for months at a time (not exactly fun to go through but at least know you now you aren’t alone). I have had some symptoms you mentioned like heart palpitations and dizziness but I promise you it all gets better with time and rest, and try not to stress because it definitely makes recovery harder. Hang in there and take care!