My story is different.

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It's been a little over a month now since being diagnosed with Mono on 5/3/19. I have been digging through these forums for quite sometime you guys. I've been lurking in the shadows looking for other peoples experiences with mono that match mine. Desperately looking for another story that matches my own in some areas. They seem to be non existent in this area. You see, I started to experience symptoms that prompted me to make my first appointment sometime after April 8th. I made what would be my first appointment soon after. The first doctor tested me for, what seemed to be, everything under the sun. image

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The tests above are the first series of tests ordered by the first physician I had an appointment with. These tests came back negative. Nothing out of the ordinary. Please bear with me as it may seem like my story is jumping around all over the place. However, I'd like to take you back to when I first started to notice subtle changes. The first subtle change I experienced was shortly before April 6th. I'd say more like late march. I noticed a slight change in my appearance. I looked a little leaner. Slightly... this being despite that my diet had been the absolute same for the last, maybe, two or so years. Everyday I'd eat a tub of cottage cheese upon waking, 15oz of chicken breast for lunch, and either a tub of cottage cheese or five whole eggs and five egg whites. One of the two (for my last meal). Every day, day after day. My profession is very physical and demanding. I work the usual eight hours as an Industrial Mechanic and weight lifted five days of the week. Despite this I never dropped any weight. So, to me, it was alarming when I noticed I started getting slightly leaner. It started playing with my mind a little but I did my best to brush it off as best I could as I still felt completely fine at this point. The weekend came and I had my son with me and my nephew was over. We got ready and I took them out to dinner that evening. As we ate I noticed it was hard to pass the chicken I was eating. This was the second symptom I experienced. As I swallowed the food I felt as if a piece would get lodged in my throat every time. So much so that I'd have to cough to help dislodge the piece of chicken/food that was present in my throat. I said nothing at dinner about it. I'd be lying if I said that I didn't start to put these two symptoms together. Now , my situation was started to get to me at this point more than usual. I carried on the next week hoping that being busy at work would help me forget for a while. After all, I still felt just fine. I was wrong. As lunch came around it was time to eat. I had my usual chicken breast and vegetables. I nuked it and sat down to eat. Lo and behold I had trouble swallowing yet again. This continued for sometime. Theres more. Before the week concluded, I started experiencing this sensation in my head after work. The only way to describe it is a feeling of having a floating head, light headed. Like I had a balloon for a head. If that doesn't make sense I understand. Sometime went by and thats when the fatigue/weakness hit me. It hit hard. The thing is, I experienced more weight loss shortly before the onset of the great fatigue/weakness. The weakness was bad. It took effort to lift my arms. Normal items now took effort to lift. I took my son to the park to try and get my mind off of things despite feeling how I felt. We were there about an hour. Half the time I was sitting on a park bench. The other half I maybe walked around a bit and climbed a hill with a slight incline. Just doing that little activity had me feeling very sleepy. I couldn't take the uncertainty anymore. I booked the appointment and the tests above were ran. Between my first appointment and my second I developed more symptoms. Chills, night sweats, back pain, leg pain. The second Dr. ran more tests. Here they are below:

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He ordered the above tests along with and abdominal ultrasound which was normal and a chest x-ray which was normal. Oh, and he also ordered a barium swallow test which came back normal as well. What did come back positive, however, is the Epstein Barr Virus Antibody Panel.

My physician diagnosed me with Mono on 5/3. I had no clue what it was and continued to feel unwell. Still felt fatigue and weakness so I made a phone appointment with another physician. She ordered more test be done. Here they are below:

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These tests also came back normal. I'm just very confused and scared at this point. Everywhere I read it seems as if the people that have lost weight due to Mono have done so due to "not eating/not being able to eat" or "throwing everything up".

I haven't Thrown up and I've always had a solid appetite. I've never had a fever or a sore throat or a lot of the classic signs of Mono. It simply doesn't make sense to me. I feel like I'm at the end of my rope. I haven't posted in a while as to not bombard this forum too much. When the nurse weighed me the first time I was seen I weighed 223lbs. This sounds silly but I now weigh around 261lbs but still have doubts. As my appearance seems to have changed. My arms, wrists, and face still feel slim which is confusing and although the fatigue and weakness seem to be a little better than the initial onset. Last week I had a bout of headaches and muscle twitching everyday. This week I seem to be having some sort of reflux. I'm sorry for the long lost you guys/girls. I'm just in doubt and terrified. At the very least I will do my best to mot venture outside of this forum. This has all gotten to me pretty bad and I can honestly say I've hit an all time low for myself with this whole situation. Again, sorry for the long post. I hope you are all doing well and continue to do well. - JC

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  • Posted

    Your story sounds similar to mine and a few others I've seen. I lot about 12 pounds. I had an appetite and did not throw up, ever. my doctor said it was due to my body burning so much energy to try to heal itself.

    my first symptom was a low grade fever, but I did not feel bad. 2 weeks later, I could barely move. I had a dry throat for about 2 days and that was it. I also had neurological issues like tremors, numbness on different spots of the body, terrible anxiety and insomnia. it was basically about a month of pure hell, followed by 6 months of healing. I still have some neurological issues and believe a nerve in my leg was permanently damaged. it will be a year in August and I feel mostly healed, though.

    Your story sounds like mono to me. You are going to experience some weird things that make you doubt your doctors diagnosis. Try not to, because it will only make your anxiety worse. I wish i had done that myself.

    I used supplements to aid in healing. you can search my post for more details if you are interested.

    This will not be an easy time, but you WILL get better.

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    • Posted

      Your reply really does help put my mind at ease. Since this whole thing started everything seems to be spiraling out of control for me. At times it definitely gets worse. Its not easy going through all of this (obviously). I'm very grateful for you and others here in this forum that go out of their way to help others. Up until now, I have not found other peoples experience that match mine in what I had brought forth. Again, thank you. By the way, how is your leg doing? Is it a numbness you're experiencing Jen?

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    • Posted

      I TOTALLY understand. It is a very hard time and not many people will understand why it is taking so long to get back to a semi-normal life. This site helped me so much. I felt like I was spiraling out of control for the first few months of my illness and I wondered if I would ever heal...but I am and you will too.

      Interestingly enough, i am having a flare up right now. The doctor looked at my blood under the microscope yesterday and he could see the virus. I'm guessing that's why my leg has been weird the last week or so. It feels neurological, like the nerve running up my leg is numb. its the same leg I had problems with during the worst of it. Also having anxiety and heart palpitations again. I know this will pass though, and it will for you too.

      So many crazy symptoms that I thought for sure there had to be something else wrong with me. All things point to mono though. Just remember that this too shall pass.

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    • Posted

      Hi Jen,

      So sorry to hear that you have been going through a flare up right now, really hope that this settles down soon and that you can be feeling much better. Remember it can be very normal to go through temporary blips and setbacks, even during recovery from mono, it can be frightening but my experience was that generally they were time-limited and that within a few weeks was able to be over these setbacks and back on track again, thanks to God.

      Hoping that you are generally doing much better and keep in touch and let us know how you are doing over the coming period - hang in there Jen, it sounds like you've made a lot of progress and remember there is hope and full recovery for and in the future!

      Craig

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  • Posted

    my story is exactly the same. same type of onset too. still have the floating head feeling, body aches, weird blood vessel issue in my hands, and still alot of fatigue... im at about 10-11 months with this. im going to start anti virals and see if they help

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  • Posted

    Your story sounds a lot like mine. I noticed a few months before it really hit that I had lost muscle tone in my legs. When the symptoms really hit I dropped 30 lbs. in about a month. During this time I was hungry the entire time and had actually increased my food intake. I slowly gained it all back and the muscles in my legs went back normal once I was able to workout again. I like a lot of others never had the typical mono symptoms during the whole ordeal I had so many strange symptoms that I was sure it was something much worse stay away from Dr. Google. Everyone is different but it took me a little over 18 months to feel normal again and when it happened it was all at once I all of a sudden started sleeping good again and everything went away.

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    • Posted

      Wow, I also noticed what seemed like loss of muscle in my biceps and shoulders. It sounds like your body has really gotten a handle on things. I feel much better after reading your comment. So much so that I took a screen shot of it and a few others. I will definitely steer clear of Dr Google for sure. Thank you for the heads up. Do you remember what month you started to get back into the gym in your mono time line?

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    • Posted

      It took all of a year to get back into the gym. The last major issue I had was anxiety for no reason if that makes sense I'd be setting at work or home and my body felt like it was in panic mode even though I wasn't panicking mentally. I changed doctors around this time and to my surprise he had done a lot of research in college on EBV. He put me on low dose sertraline and told me to start exercising, I started out slow with 10-15 minute walks on the treadmill and as many push-ups as I could do (which wasn't very many at first) then added one leg exercise at a time. I'm no where near my pre-illness fitness but I'm close I probably would be if it weren't for trying to play catch up with all of all of the stuff that didn't get done while I was confined to the couch. About the sertraline I quit taking it after about three months my anxiety was gone and the sertraline was making me sleepy so I quit taking it and I've felt pretty good sense.

      The people on this sight are great people who understand how bad this can be for some people. It was a huge comfort to know that other people have had similar experiences and recovered. I still have small reminders from time to time but that's just when I over do it. Hang in there you will get there.

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    • Posted

      Hi Kelly,

      I totally agree, I was a fit and sporty person before I took mono, and it took me some time and confidence before I felt my body was ready to take on even gentle exercise again. It takes time but I was able to get there with time too, just so important to listen to your body and not overdo things too soon.

      I remember feeling that my body resilience would never return and that I would never be able to anything too physical again after this virus, but it's just the virus tricking you into thinking that - your body resilience does return with time as does how you feel and your confidence and health.

      Hang in there everyone, this virus tries to do its worse and even though it can take a bit of time to get fully over, you will get fully over it and back to the things you enjoy doing again - God is our great healer - thinking of you!

      Craig

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    • Posted

      Thanks Craig, it feels good to be back to my busy body lifestyle. In the last few months I've been on four business trips, remodeled my basement, and started working out again. This time last year I didn't even have the energy to think about all that.

      For me there came a point where I just had to push through it. The surprising thing is I took a trip to California still feeling like crap and worked a four day trade show. When I got home I slept for almost two days straight, best sleep I've had since this started. Since then I have felt pretty normal. It is so strange how it took forever to make small improvements and then all of a sudden boom gone. I love to work that's what I do for fun feels good to look at my hands and see calluses again.

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    • Posted

      That's amazing all the things you have achieved the last few months! You should definitely take real heart and confidence from that for sure. It takes courage to take those steps forward and you've been doing great by the sounds of it!

      Hoping things can continue to improve over the coming period, and wishing you good health going forward.

      Craig

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  • Posted

    Not to undermine any of your symptoms but your story does not seem out of ordinary to me. I didn't have many of the "classic" symptoms either, never even got officially diagnosed because on paper i was healthy. I had no signs of mono, except for slightly elevated white blood cells. On the inside however, I was suffering. Never had sore throat or swollen lymph nodes but the weakness and fatigue was horrible. That balloon head feeling, lightheadedness happened to me too, one of the worst symptoms. I think some of your anxiety about weight is probably the virus making you paranoid. It made me paranoid too, anxious about the slightest changes in feeling or appearance. This virus really affects you mentally and is so tiresome. It has been more than one year now since i got sick, i am much better, and you will get through it too.

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    • Posted

      DOMINIKA

      When you refer to weakness what is the weakness you are or did experience?

      I Myself have a specific weakness in my left arm and index finger and thumb

      My left arm sometimes does not feel like its my own

      Have you had any weakness similar to this?

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    • Posted

      Yes, I feel as if you nailed it. The mental affects have really taken their tole on me. Lately, being so anxious has truly made me feel mentally exhausted. Thank you for your reassuring words Dominika. I really had no idea mono could play with your head in so many ways. I truly hope I can reach the point of where you are at in recovery. I'm happy you doing much much better.

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    • Posted

      hmm.. it is hard to explain exactly, but mostly i just had an allover body weakness, with my legs probably being affected a bit more. When I would lay down in bed to go to sleep i would just lose sensation in my legs if i kept them still, just felt like they werent there, very strange. Once i moved them a bit or clenched my muscles i could feel them again.. still happens in a more mild way when im extra tired now . Basically my weakness just felt like my legs would buckle out from underneath me at any moment, so it was very scary to do anything that involved walking around for longer periods of time. I didn't really have any specific weak points like you, but ive heard of lots of people who feel weaker on one side of their body than the other. everyone seems to experience it a bit differently so try not to freak yourself out! You'll get through it!

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    • Posted

      I am absolutely sure you will get better! It really takes a bit of time and patience, try not to get discouraged and remember that the voice of anxiety is not the voice of reason. Eventually you just get used to it and cope with the unpleasantness, learn to ride it out. Sometimes it may feel like you are stuck in one place, but at others it will feel like you've made a giant leap in your progress. this is just the nature of this virus, but it DOES get better. Try not to worry too much (I know it is easier said than done because i was in your exact situation last year at this time) but stress makes it worse, just like with anything. Take care of yourself and relax as much as you can (:

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    • Posted

      Definitely wise words Dominika - it is great to see posts from you. Just wondering how you are doing at the moment, hoping very much that you have been feeling well and school and everything has been going well.

      Thanks for keeping coming back on the forum and encouraging and helping others - you are true blessing to the forum! It gives people real hope when they get messages from people who have been through the same awful experience but got better and can offer some hope and wisdom!

      Hoping you are well and keep in touch!

      Craig

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