I am scared I was misdiagnosed with Mono, and actually have Lymphoma

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I am a 21 year old male. In July I developed a low grade fever and a pretty bad headache. I have a brain shunt, so I had some X-rays and CT Scans (X ray of my chest and CT of my brain) which came back clear. More testing revealed a positive EBV / Mono test. It's been four months, and I still have a fever. One of my tonsils is swollen, I feel itchy all over, which from what I read, are signs of lymphoma, I can't find much info saying those correlate with Mono. I saw a hematologist, I had a blood test done called a "leukemia / lymphoma flow" which came back clear, but again, from peoples stories on here, most of them had fine blood work. I have no swollen lymph nodes in my neck, and none in my armpit that I can see or feel. I have to go back to my hematologist to possibly get another CT, but that isn't for 2 weeks. I'm hoping it's hypochondria, but of course I've read that Lymphoma can cause a false positive for Mono... All which is stressing me out and leaving me extremely worried. If this is useful info, I've had my blood work done 4 times since I was first diagnosed with Mono, and my lymphocytes have gone down a lot (still elevated) but no where near where they were when I first found out I had mono. Hopefully that's a good sign that it's just mono. I don't have night sweats, I don't have much shortness of breath, I can't feel any swollen nodes in my neck or armpits, but I do have a fever, I am itchy all over, one of my tonsils is a bit enlarged, and I am fatigued.

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  • Posted

    The worse part is not knowing, but if you've had 4 blood tests I wouldn't worry. The doctors and lab technicians who examine your blood know what they are looking for. When you give blood it is examined on the same day. If you have cancer or anything serious you would be called to go into hospital urgently. This virus whilst it attacks your body physically is also very draining mentally. The dark thoughts I've had and anxiety are all part of the journey sadly. Being unwell for so long and not being able to live a normal life will take it's toll on anyone...regardless how strong you are. Just need to try and remain as positive as you can and think about what you are going to do when you get better again, which will come over time. Hang in there:) we will all get through this together in the virtual world.

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  • Posted

    Hi Clayton,

    My blood work was fine also, I think everyone has feared lymphoma ect. It is just that this virus makes you feel things you have never felt before and it lasts so long. that you think it must be a disease rather than a virus. My granddaughter and daughter also have it.

    Your doctor sounds like he takes it seriously and giving you these tests is only a pre caution. I have heard that itching can be due to the liver being stressed by the virus. I would go with the good blood tests and just know that this virus is just a rough road and you will eventually recover.

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  • Posted

    I agree that it's a good sign that you've done so many blood tests and they came back clear. Blood tests are to rule out anything scary, so it does sound like they are investigating. Nothing might change in your blood tests if you have mono, for me the only thing that came up was that it severely affected my liver. Have they done liver tests? Ask them and make sure. It doesn't affect everyone's livers, more so the older you get it (i was in my early 30s, this was a few yrs ago). Everything else in my blood tests looked fine. I had initially gone to the dr because i had a constant low grade fever that didnt go away - that's when they found out the liver was affected then only after more tests did they discover it was mono (they guessed it might be and tested to rule it out) . And it showed i had a current infection. since then it's shown that i have had a past infection. so there are differences apparently with mono tests - they show if you have an active/current/past mono infection.

    i would guess most likely you do have mono though. and it doesnt sound that bad, it hasn't made you bed bound, your body is just fighting really hard to fight it off and keep any bad symptoms coming (which is why you feel fatigued). so rest as much as poss.

    the itching is totally normal, i had that too.

    has any of it got any better at all? dont worry if not, you're probably not far off from the turning point and it getting better.

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    • Posted

      Hey Tina,

      It's nice to see a post from you - just wondering how you are doing at the moment? I do hope things are more settled for you and you are seeing signs of improvement and recovery. And definitely good and wise words for Clayton, he is going to get there and get better just as everyone on the site is I truly believe that.

      Craig

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    • Posted

      hey craig. thanks for asking. im fine now. the mono i had was in late 2014, and i recovered within a few months. this year ive since had issues with night sweats and fatigue (something i never had before mono, and were the last symptoms to leave for me of the mono) so it may be a case that the mono was slightly activated in me again or was my bodys way to react to viruses. but generally im fine now

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    • Posted

      Hi Tina,

      That is really good to hear that you have been doing fine. Hoping that these night sweats and fatigue can subside and stay away, they really are horrible, sometimes I have found too with mono, especially in the first few years after having it, you can have episodes like that when a little more run down, under extra stress or dealing with another flu / virus type thing. Hoping everything can remain settled going forward and for good health for you Tina - sending best wishes from Scotland.

      Craig

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    • Posted

      thanks craig. and how are you doing now? how long has it been since you had mono? and yes you're definitely right, after certain illness or stress it can bring back those symptoms. i haven't had any relapses at all since 2014 until this year, after a bad cold - i didn't take time off work, and it wasn't even one of the worst colds i'd had but i had the extreme fatigue and night sweats on and off for this last year. and the night sweats definitely appear during times of stress this year too. i think in a way it may even be the body's immune system coping with how it coped with mono.

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    • Posted

      Hi Tina,

      It was 12 years ago I had mono, but although a long time ago I still remember how awful it was to go through and it was a life-changing experience in many ways, and that has drawn me onto the site here as just want to encourage others going through this that there is hope and recovery. Thanks only to God was able to recover fully and get through it after a particularly tough year, and like you the first few years after it although was doing better still had some mini relapses and some periods where the fatigue and things hit again - this does continue to fade as the years go by Tina in my experience and hoping so much that this horrible fatigue and these night sweats cease and you feel much stronger and better again. I remember particularly in first few years I took normal colds, flus, viruses harder than before, so remember get plenty of rest and look after yourself if or when such things happen!

      Just grateful again to God for getting me through that time in my life. Dealing with some other issues this last 18 months in terms of back pain and prostatitis, some deep lows and depression as a result and losing job on the back of these things. So it has helped me just being on the site and chatting with others and even though current issues have not been mono related people like yourself Tina have shown so much kindness and help towards me, which means a lot!

      Thinking about you Tina and praying for your good health, peace, grace and happiness going forward in the name of Jesus.

      Craig

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  • Posted

    Hi Clayton,

    I most definitely empathise with what you're going through as I went through the same fears, worries and concerns when I had the virus. When it goes on for some months and you still feel the fatigue, low grade fever and generally feeling not right and unwell, it is only natural you start to worry and wonder what's going on and why not seeing an improvement, especially when so many doctors seem to offer the 'you will get better within 6 to 8 weeks' advice with mono.

    Really want to reassure you Clayton, from reading everything you've said, I truly believe this is mono and nothing more sinister. I had EXACTLY the same symptoms as you, still so intense at 4 months and although it took me a few more months to see full recovery, I did get there thanks to God and you will too. It really is normal (not that it makes it any easier to cope with) to have this fatigue, itching and fever. You've done the right thing getting blood and other tests, and absolutely take that as reassuring that almost certainly if there was anything more to worry about it would have shown on these. It's not easy to stop worrying though when going through it I know, I remember having numerous blood tests too after the initial diagnosis of mono and they came back as clear even though I was still feeling awful - this is very normal with mono too, this is classic for mono. Your body just takes extended time to recovery from this nasty nasty virus, but it does recovery Clayton it really does and you will get over this and get better with time!

    Mono is an awful and traumatic experience to go through, so underestimated often by doctors and society in general. Just cope with managing each day if you can Clayton, get plenty of rest and of course don't hesitate to keep seeing the doctor and asking for blood tests during the next few months with this. And remember false positives for this are not the norm and most people that do get a diagnosis of EBV it is because of mono and nothing else! And remember 90%+ of the western world's population get this virus at some stage of their life, many as a child when they don't experience the awful symptoms you do as an adult, and the vast vast vast majority of these people fully recover (even if it takes time) and are healthy and well and free again once fully recovered.

    And remember you will FULLY recover and get better Clayton - take it from me as someone who went through an experience very very similar to everything you describe and experienced the same worries and anxieties - you will get there with time! Thinking of you and hang in there.

    Craig

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