Persistant lymph nodes.

Allergies, blood and immune system
1

Ok so this is a long one.

I am really overly upset with the health system.

In january i had glandular fever. It took 3 months to recover from and then i was back to playing netball 3 days a week and hitting the gym 3 days a week. I work part time and study part time. Im 23 and usually eat as healthily as possible.. no alcohol.

In July i came down with the flu probably viral. Everyone in my work place had it.

4 weeks later i was still overly fatigued - sleeping 10 hours plus naps during the day. I found it hard to last an entire 8 hour shift at work. I was still dizzy and nausous.

Dr said post viral fatigue.

September...

Swollen lymph nodes on my neck... not large, just noticeable. Quite a few. Still fatigued.

Dr sends me for ultrasound for thyroid.

I am unable to run so no more netball.

I get out of breath very easily. And mostly too fatigued to play sports or gym.

I am working less and not attending classes. I am so tired.

Blood test and scan for thyroid are normal. Dr seems to think im being a hyperchondriac. So off to a new doctor.

Ecg, abdominal scan, echo, numerous blood tests.

Normal normal normal.

It is now the beggining of october...

I am depressed about my condition. No sports or gym since... finding it hard to maintain my weight. Dropped from 65kg to 60 kg despite dramatically changing my diet to high carbohydrate food for energy.

Swollen lymph nodes in groin. Complaining of fullness in ear.

See ENT after 6 days of nasal irrigation, steaming and steroid nasal spray for fullness in ear.

ENT says nothing wrong with ears.

Go to dentist for annual check up and he thinks in grinding my teeth in my sleep so takes an xray to fit mouth guard. Wisdom teeth need to come out... no pain and not urgent. Just no room for them.

However... sinus' looked blocked (from what he can see) suggests i see an ent -_-

However i do not have seasonal allergies (or i havnt before) my nose is not runny or blocked and i am not sneezing.

New booking with ent.

Still fatigued. Dizzy when standing.

No pain around face or in lymph nodes except behing left ear. Small painful spot might be lymph node. Soooo fatigued general feeling of unwell.

Any suggestions ?

Starting to get scared it might be lymphoma.

Not sure if sinus infection - shall update next week after ent.

Current symptoms.

Dull pressure in abdomen

Randomly itchy sculp (comes and goes)

Fullness in ears

Fatigue (soooooooo fatigued)

Very upset over feeling sick.

Swollen lymph nodes in groin.

New one on the left side.

Stiff neck from swollen lymph nodes.

Anyone with suggestions will help.

I feel as though this process is taking so long and im really getting to my wits end. Looking at suggestions to ask my doctor about when i see them next. However no point until after i see the ent.

Thank you in advance.

2

Hi. Bit if a mess isn't it. OK, if you have had swollen lymph nodes for a while tell (not ask) your doctor that you would like a biopsy done. Fatigue, weight loss, nausea, itching - it needs a proper diagnosis, and the only way to rule out cancer is a biopsy. Glandular fever can have after effects for a very long time, especially fatigue, and especially if you have been pushing yourself too hard and not allowed your body to recover properly. If you have a sinus problem that could be a totally separate issue and can cause nausea. So you have to rule out one thing at a time, the mist worrying first. So ask for that biopsy.

3

I agree totally with Joy.  Very likely this is the after effects of glandular fever, which is a bitch of an illness, and can take a very long time.  the swollen lymph glands could also be from that. . . but then, on the other hand it may not be.  Some of your symptoms are typical of lymphoma,  . .weight loss, itching, out of breath . .  so for your own peace of mind, ruling out that illness by doing a biopsy on one of the swollen glands sounds like a good idea.  Once you know it ISN"T lymphoma,  you would be free of that worry and perhaps start to feel better.  I hope things start getting better for you soon!

4

Oh yes, an afterthought. . . if your doctor continues with the hypochondriac idea, I should tell him that while many symptoms can be imagined, swollen glands are pretty obviously not imagined. . . . 

5

Thanks, i will press the issue. I think since this is one of the first times ive had an issue with my health, i felt like doctors had my best interest in mind. But i suppose if i dont ask i wont get. Ill definitly feel better if i ruled it out. Thank you for the reply. Makes me feel a little more knowledgable. !!

6

Thank you for the reply. I feel like i have alot more strength in terms of pushing the issue. Its nice to hear people telling me to rule things out. I think after so long ive kind of lost alot of confidence in questioning doctors or asking them for something specific. But now ive got an idea of what i can ask for... so i thank you for that shall keep everyone posted.

7

Please do keep us posted, we're all rooting for you.

8

I know exactly how you are feeling. I am a 20 year old female and am also concerned that I could have lymphoma. I know the anxiety and how awful it is to know something is wrong but not have any answers. I have had a CBC which came back normal (cbc does not rule out lymphoma). Alot of people with Lymphoma have had perfect CBCs.  I also got an ultrasound of my neck done today. A nurse performed my ultrasound but the radiologist that looked at my ultrasound results didnt even discuss the results with me, I didnt even talk to him/ her or see him/ her--he sent his findings to my university's health center doctor beacuse she is the one that referred me to get the ultrasound done. She emailed me saying, "Your ultrasound was basically normal. Enlarged lymph nodes were mentioned but none seemed concerning."  I was thinking what??? These lymph nodes are big and I want to know why because Ive had them for awhile now. I have a right submandibular node that feels about the size of a large grape, maybe even bigger!! I'm not sure how great ultrasounds are for lymph nodes but Ive done some research, probably too much research, and I found that they can see if lymph nodes at least looked suspicious in nature. I did not like the words "basically normal." and "none seemed concerning." I am scheduling an appointment tomorrow to talk about my results and concerns with my university doctor and am going to request a biopsy. If she says no I'm seeking another opinion.  Like JoyKF53 said, the only way you will know for sure is a biopsy. I am going to fight for an excisional biopsy and not a FNA (fine needle aspiration). FNA can miss cancer cells but a excisional biopsy will not since they are taking the entire node out.  Be persistent, it is your health not theirs.  No disrespect towards doctors but they are only human and they can miss things. Cancers can have the same symptoms as less serious illnesses and vice versa. I am not saying we have lymphoma but from my knowledge and research MOST people should not feel persistently enlarged lymph nodes especially bigger then 2cm and if you do then it is important to get it checked out. I am in school to be a vet tech (animal nurse) and the same goes for animals. You arent supposed to normally feel their lymph nodes either. However, I have stumbled upon a forum where there were a generous amount of people talking about how they have been able to feel their lymph nodes for years and even decades and they were checked out by doctors and everything was fine and that makes me feel alittle better. I'm not sure about you but I will not feel 100% satisified untill I get a biopsy. Sorry for the lengthy reply and for rambling about my personal experiences, I am just trying to help and I just wanted you to know that you aren't alone. This is scary! Lymphoma is rare but you cant go through life thinking "it will never happen to me." It's a real possibility but I find comfort knowing it can be treatable and potentially curable depending on the type of lymphoma. Just try to stay positive. It's soo hard but you have to. I feel better when I'm with my friends/family and going out and doing things that I enjoy. 

9

Thank you so much for replying to me, 

I have been googling too and i know i shouldnt be. 

I am overly stressed too. tests results and doctors appointments are taking a long time (or atleast i feel as though they are). 

My anxiety is through the roof, and im getting a little depressed about it. 

Your reply to me meant so much you will never know. 

Thank you so much. 

Please keep me updated on your journey. 

I would also like to know if you are experiencing fatigue ? that is my main concern (had prior to feelings of anxiousness).

 

10

Hi. I know that waiting for appointments can seem like eternity. You want results NOW, but waiting is what we have to do. My cancer and brain tumour haven't caused fatigue but after I had glandular fever I was fatigued for a very long time. When I first became unwell I spent hours googling and must admit, every time they find a new problem I'm back to google. Frighten myself silly sometimes but I always prepare for the worst and hope for the best. I do get depressed and anxious but when I do I look at all the good things in my life and give myself a good talking to. And keep taking the tablets! Lol. Talking helps, having a rant on here is good. Keep in touch, I want to know how you get on.

11

Honestly this forum has helped so much. I felt fatigued from glandular fever for 3 months. I was actually ok with that. Because i knew what it was. But i got better and was back to the gym etc... then a new bout of fatigue... so i suppose it could be post viral. But when something in my gut is telling me there is something else going on.

Thank you so much for your reply.

Working on meditation. And talking to my partner and a cousellor about fealing anxious. In addition to having online community support. You have all been amazing. Thank you so much

12

It's our pleasure, that's what we're here for. Please let us know how you get on - other people's problems take your mind off your own! Lol

13

I also have been worried about this condtion. I have slight lumps that i can feel in my neck. Doctors say they do not feel anything. I got bloodword and an ultrasound of the neck which the ENT requested. Results were normal but I still got a second, third, and fourth opinion on my neck. Nobody is concerned or alarmed. My GP thinks i have anxiety. I have had a few panic attack leading me to the ER. But now i do not get panic attacks anymore because i am trying to stay positive and advocate for my  health. Now i started to get itch all over my body at random spots and i have no rash. This is another reason why I am concerned that i do not have answers... This is something too serious to get confused with anxiety. Please keep me updated smile

14

Hi Monii, keep advocating. 

I am currenlty seeing a gastoenterologist, an ent and a haematologist in the next couple of days. 

after that I will accept that there is nothing going on. 

But until i rule everything out I wont. I think its really important to take your health into your own hands, no one cares about your health as much as you do. 

Goodluck 

15

Hi Idani I have read your story and note that you have been in touch with Joy.

She is a hive of information and support, we have had many communications in the past.

Your symptoms sound similar to what I had.

My story is there for you if you care to search under patient JohnEdna.

l am interested to hear how you get on and will keep an eye on this site.

Best wishes and good luck.

John ;-)

16

Hi john,

I was wondering if your doctors suggested chronic fatigue ?

I had one doctor think that as lymph nodes arent growing anymore. How large were yours before diagnosis?

Thank you so much for replying to my post. Everyone who has replird on here has helped me on my journey. Thanks

17

My nodes in my neck were around the 1.8-2cm when measured under ultrasound but felt like little peas to me.

At the time of diagnosis I wasn't aware of the ones in my abdomen, this was revealed after CT scan and they were quite large with one at 4.5 & the other 5.5.

My chronic fatigue came into the equation following my bone marrow transplant and heart surgery.

However in the time leading up to my diagnosis I was in a high stress management position and was quite run down. .

Before I was even diagnosed I had no idea I had lymphoma, my visit to the doctor was to get results of an X ray to my shoulder from a fall that I had at work. The report wasn't back and to save wasting the visit the Doc asked if I had any other problems. I mentioned the lump near my ear. The rest is history.

Go see your doctor and ask plenty of questions and make sure you get answers to ALL of them.

Stay positive, keep smiling, & keep us posted.

Best wishes.

JE. ;-)

18

Hi JohnEdna, nice to see you on the forum again. We haven't got a healthy body between us have we? Lol. I didn't realise you'd had heart problems as well, does that trump my brain tumour? Lol. How many times have we had to encourage people to go to their doctors and how many times have we seen them fobbed off by G.P.s who should have referred them for further investigation? I'm so grateful to my G.P. who immediately admitted that he wasn't sure what the pea sized lump behind my ear was so referred me. I'm at King's hospital Monday week to see the neurologist to find out what treatment I'm going to be offered, I'm pushing for Gamma Knife but we'll see what he says. I can't be doing with "active surveillance", forever wondering if every slight headache is the tumour getting bigger. My theory is deal with it now before it causes more problems. I do hope that you're keeping well, keep in touch.

19

I agree with keep on advocating for our health. I am just fed up because I am convinced I have lymphoma but do not know what are the next steps in order to rule this out. In two months my blood has been checked 3 times. My WBC is in the higher normal range and everything else is very normal. I still have this lump on my right side of neck and had about 5 opinions of it... They told me that they don't feel lymph node, one told me it's naughty muscle, and the ENT said maybe a thyroid nodule so she sent for an ultrasound for neck/thyroid area. Everything is normal.... Now I have sudden itching at random spots on my body but no rash. I know this is also a symptom of lymphoma. Within this timeframe of visiting doctors, I also visited a psychiatrist because I was severely depression and had crying spells all day everyday non-stop. My blood pressure and body temp was low too. 'Y body temp has been 96-97 and that also worried me. I know it's not a thyroid issue because they ruled that out with the ultrasound and bloodwork. I went to the ER on October 1st for trembling, vertigo, and nausea. I demanded a CT scan of the head because I thought I had a brain tumor that was causing the trembling and vertigo. They said my symptoms were stress related because my CT scan is clear. So going back to the psychiatrist, I was diagnosed with GAD, health anxiety, and panic disorder. They prescribed me Lexapro but I'm not taking them... I just want to make sure that I haven't missed a serious diagnoses. I do not know what else to push for. I'm thinking of taking myself to the hospital for a biopsy of this thing on my neck which doctors think it's non-existent... I'm stressed over this because I'm stuck on what are my next steps

20

Hello Joy,  Sorry i've been a little slack lately and haven't been too close to my PC., but I'm glad to see that you are carrying on the good work and helping others with your well informed support. 

However I am wondering about YOU YOURSELF.... how are you handling your present situation and what more has happened about that Gamma Knife process that you are about to undertake?  Please fill us in.

​I thought that you were aware of my Heart attack which occured on the 3rd day of High dose Chemotherapy for my Autologous Bone Marrow Transplant in 2000, at Sydney's St Vincent's Hospital.

​With bloods at rock bottom and me knocking on death's door, I had to wait for blood recovery before I could contemplate surgery.  Stents were put in place in the cardiac catheter lab while my heart was still under stress. (there is something to be said for having a heart attack when already in a hospital).

After about 4 weeks bloods were at a safe level to allow surgery, but since the Olympic Games were in Sydney in 2000, our Govt. deemed it necessary to make financial cuts in certain areas to finance the "Main Event". Health was one of them.

​I was listed for surgery on four occasions and cancelled on three.  Firstly to provide a window for a heart transplant surgery,  which was fine by me but the others were because there wasn't staff to man the high dependency beds in ICU surgery recovery.

After all of that I finally ended up with 5 x CABG's or in other words a plumbing rebuild.

The blockages to all of my arteries was later put down to calcification from all of the previous chemo that I had had since my NHL was diagnosed in 1994.

​So there you have it,  I am still alive and kicking, preserved by drugs and now suffering the ongoing side effects of the same.

​I don't know if you have heard the latest, I have an abdominal aorta aneurism, only small (about 35-40mm) which needs to be closely monitored.  They beliece this may be as a result of Radiation that I had in that area in 2003 when I had a 90mm mass nestled in behind my liver.  I had already had the strongest chemo that my body could stand during the transplant so Radio was the only option and after 30 cycles of 4 field radiation my gall bladder was also involved and had to be removed.

I had another recurrence after that with a golf ball sized mass in the lower lobe of my right lung..... more radio.

I have achieved remission for the first time since diagnosis (meaning that I have gone five years without a recurrence) razz

​This could go on for ever but now at least you have a little more of my history.

LOL and best wishes to you and please keep me in your loop.

John  wink