Persistant lymph nodes.
Posted , 13 users are following.
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.
1 like, 40 replies
JohnEdna ldani4
Posted
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 ;-)
ldani4 JohnEdna
Posted
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
JohnEdna ldani4
Posted
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. ;-)
JoyKF53 JohnEdna
Posted
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.
JohnEdna JoyKF53
Posted
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)
?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
JoyKF53 JohnEdna
Posted
Hi John - I'm speechless!! I've never heard of anyone have so many things wrong with them! You must have an amazing determination to keep going and stay cheerful. My ailments are nothing compared to what you have had to go through. I have to ask, do you have friends and family that are seeing you through it? As for me, I'm seeing the neurologist Monday week to discuss the results of my recent MRI. I'm hoping for Gamma Knife (as I said before, I can't be doing with "active surveillance"
but it may be surgery, I just don't know. I'll be sure to let you know. Keep smiling!
JohnEdna JoyKF53
Posted
Hi again Joy and sorry if I shocked you with my epic tale of woe.. yes i am so lucky to have a wonderful wife and kids all of whom provide me with incredible support. Without them i would be long gone.
My wife has had her share of problems too. About 40 odd years ago she was involved in a terrible road accident seeing her in a wheelchair for 4 years and told that she would not walk again.
Her determination rubbed off on me. She walks. Also she has had cervical and vulval cancer as well as a TIA (mini stroke) and Lupus.
Yes you are right Joy "there is not a good body between us".
After all of our various episodes and at 70 and 73 we have been striving to have some quality in life rather than quantity.
I often said during early days of treatment for NHL, I here for a good time not a long time.
Being positive has gotten both of us to where we are today and we hope to be around for a while yet.
I am a volunteer with the Cancer Council and enjoy bonding with people who have been diagnosed with cancer and attempt to help them with some of the fears that they may have about the treatment they are about to undertake. A bit like yourself helping others here on Patient.
Again good luck, keep smiling and above all stay positive. 😉
Until next time lol
John.
JoyKF53 JohnEdna
Posted
Hi John. I wasn't so much shocked as amazed! And your poor wife has been through the wringer as well - life's a bitch sometimes. I'm so pleased that you both sound as though you are doing well right now, it's about time eh! My husband had a TIA a few years ago and has recently had gastric problems resulting in the removal of a polyps after a colonoscopy and a diagnosis of diverticulitis with severe inflammation. I am 63 and he is 64 so we have no intention of having our retirement years spoilt by ill health! And I have every intention of seeing my beautiful grandchildren, who in a small way I have helped to raise, grow into adulthood and spread their wings. I do hope that you and your wife continue to stay relatively well, keep in touch.
ldani4
Posted
Hi everyone.
Im glad to bring you an update.
My symptoms kept continueing with each doctors dismissal i am now 57kg and started having aching joints, trachycardia, vision problems etc.
Except every doctor i tried insisted it was all in my head, i was anxious or a hyperchondriac because im studying health science.
Well i found a doctor who didnt think i was crazy. He listened to my story bit by bit. Sat back into his chair and said 'youre a celiac'
The rest is history.
I thought id give a conclusion to this story. And a little more detail if its something you want to rule out but i do want to mention that if you do get the blood test for this it is not fullproof. Mine came back as a false negative because i wasnt instructed on how to prepare for the blood test as my GI really didnt believe i had it, he failed to mention the 6weeks of obligatory 4 pieces of bread eating a day before bloods being drawn.
Just to re-iterate my point. Just because you convince someone to do a test for you, doent mean theyre going to be comprehensive. There is no point dealing with a doctor who simply thinks your crazy because he is not going to give you thorough and appropriate treatment.
So you can imagine how this caused a delay in my diagnosis.
Eventually i went and say a dietician because of my weight loss. Who went through my history with me, and said 'are you sure youre not celiac'
As i explained i had already done the test and how it was conducted she insisted it was a false negative and to see another doctor.
The next day i googled a gp who specialises in it, within 5 minutes of telling him my symptoms and my story he leant back into his chair and said 'youre a celiac or extremely gluten or wheat intolerant but either way you need to stop eating gluten right now from this day forward'
So i am waiting on blood tests results for vitamin and mineral deficiencies as i am having some sever implications due to malabsorption over the last 6months. (Heart arythmias, vision loss, dizziness, weight loss, numbness tingly etc...)
It took 11 doctors and a whole bunch of mental damage. BUT i emplore everyone to remember, youre body is telling you something is wrong. If you know its not anxiety then DO NOT BOTHER WITH DOCTORS WHO DISMISS YOU
No one knows your body better than you.
Also untreated celiac can lead to many other autoimmune disorders e.g. thyroiditis, diabetes and finally lymphoma of the small intestine.
Please keep persuing, keep going, our bodies do not fail us for no reason.
JoyKF53 ldani4
Posted
I'm so glad you have finally found a doctor who knows what's wrong with you. Perseverance usually pays off. Well done and good luck.
JohnEdna ldani4
Posted
My congratulations to you for your persistence and good luck for the future.
Hope you have a great Christmas.
JohnEdna ;-)
JohnEdna JoyKF53
Posted
Persistence pays off. .... a good result but lots of psychological damage done in the meantime.
I'm sure that your support has been of great help to Idani, Keep up the good work.
I hope your situation continues in a positive direction and that you are able to enjoy the Christmas season with your wonderful family. No doubt we will meet again on this site.
May 2017 bring lots of plusses.
Lol JohnEdna.;-)
JoyKF53 JohnEdna
Posted
martinarvelo ldani4
Posted
lucy42785 ldani4
Posted
Hi Idani, I was curious if you have had any more progress? I'm suffering symptoms similar to yours but not as far down as the groin yet. I've been through numerous tests for almost a year and all come back clear. The one thing we all agree on is that I do have swollen nodes that started recently in my neck but they are not large enough for the docs to worry about yet. The swelling is becoming unsettling
Thanks
JoyKF53 lucy42785
Posted
Hi. I find it worrying that doctors aren't concerned because the nodes "aren't big enough yet". I went to my GP with a small lump about the size of a pea behind my left ear. He immediately referred me and I was very quickly diagnosed with lymphoma. The chances are that you do not have cancer but I find it odd that doctors are waiting for it to get bigger before they deal with it. A simple biopsy, however small it is, would tell them one way or the other. Good luck.
lucy42785 JoyKF53
Posted
I also have severe allergies and got the flu twice this year. My dizziness is slowly improving as we find the right allergy medication. I think because I'm seeing improvement that's why they are holding off.
The swelling came last 2 months ago. I'll give it another few weeks as I have another new medication to try. Then I'll push for a biopsy. Oh, my lymph nodes swell and deflate. It's not a constant swelling so thats why the doc was encouraged I'm fighting an infection. My weight is good and I'm not tired. This is all so confusing
When we're you diagnosed with lymphoma? I hope your feeling great again.
JoyKF53 lucy42785
Posted
Hi Lucy. I didn't realise the swellings came and went, extremely unlikely to be anything serious then. If you have other medical problems I would put it down to the lymph nodes doing their job. I was diagnosed 2 years ago, had chemo and radiotherapy then a brain tumour was found during a routine scan. 3 weeks ago I had Gamma Knife surgery to sort that out. I feel fine, just a bit of ringing in the right ear. I'm very lucky and I know it! Keep positive, I don't doubt that you'll soon be feeling better.