My story is different.
Posted , 10 users are following.
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. 
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:
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:
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
0 likes, 23 replies
craig07920 Jaycee192
Posted
Hi Jayce,
You have absolutely nothing to apologise for in terms of opening up and taking time to describe just how frightening and tough everything has been for you lately - Jayce I really remember the first number of weeks / couple of months of mono, and how awful I felt physically and mentally, just not knowing what was happening to my body but feeling something major was going on. It was a terrifying experience and I wouldn't wish it on anyone.
You definitely have done the right thing getting the bloods and different tests done. One thing to remember with mono is that it can affect everyone differently, there are often frequent and common symptoms that most people have like constant fatigue, that general feeling of being unwell, feeling a bit 'stunted' or not right in your head, but there are often many other symptoms that can be unique to each and every person. From what you describe, it definitely sounds like this is all coming from the mono virus and nothing else. I know that doesn't help much when in the midst of suffering and worry, but as someone who was in a similar phase mentally and physically in the weeks after being diagnosed with mono, I want you to know that it will get better and what you are going through now is BY FAR the worst and that the intensity of this thing lessens as time goes on and you will reach full recovery - it's just so frustrating that it can take a little time but truly you will get there.
Also take it as encouraging and reassuring that you have put some weight back on - remember Jayce this virus really knocks your body for six and it can be normal to lose weight and just generally not look or feel like you normally would - you will get through it Jayce and truly just focus on looking after yourself right now, getting plenty of rest, remembering that God is looking after you and that you are going to get back to full health again and that what you are going through now is a terrible experience but it will be temporary in the grand scheme and much healtheir and happier times are ahead for you.
I went through so many of the same fears and worries after diagnosis Jayce, thinking 'surely ALL this can't be caused by mono?' and trolling the internet and getting even more worried as only reading the scare stories that people post. It's so hard I know and remember -but you will get through this - and remember that the vast vast majority of people who get mono get back to full health again, even if it takes a little time. I've read different estimations that this virus affects anywhere from 75% to 90% of people in the western world at some point in their lives, many get when very young when the full effects aren't experience as they are for an adult - and the majority of these people are well and live full and well lives after going through the virus - something to hold onto for hope definitely!
Keep in touch Jayce and let us know how you are doing, I'm still thinking about you and believing that you are going to be well again.
Craig
Jaycee192 craig07920
Posted
Hey Craig, how are you feeling bud? Thank you for taking the time out to reply and check up on us. We are truly blessed to have you my friend. Your words do help put my mind at ease as I've been having a really tough time as of late. More than usual. I really can't thank you and the others that have replied to this thread enough. Because of you all, I will be able to get a good nights rest tonight. It is really odd that symptoms of mono can very quite differently from person to person. Its quit confusing actually. Again, thank you for your reassuring words Craig. I hope I will one day reach the point you are in your mono journey. I hope and wish to make a full one hundred percent recovery.
craig07920 Jaycee192
Posted
Hey Jayce,
Thanks so much for the amazingly kind words, equally so your encouraging words for me and the fact you've taken time to pray for me lately has been a great source of encouragament and help to me to - I can only thank you Jayce. I've still been having a tough time unfortunately, this week have had another setback as I seem to have twisted or done something to my lower back again, just hoping and praying so much that it can settle again as that really gets me so down.
You're so right about mono Jayce that it can affect people in a wide spectrum of ways, I've only really started to learn and appreciate that fully since I started coming on the site here. One person can struggle with this virus in a completely different way to another person's struggles, yet the root cause is the same. So don't worry Jayce if you get symptoms which seem to be slightly different to those that people mention on the forums, that can be very normal indeed.
And truly want you to remember that there IS full recovery and good health beyond this virus for virtually everyone who goes through it - even and especially those who are very unwell with it and struggle for many months. That in no way is a sign that things won't get better, it is unfortunately a very common course for this virus for many people, but equally it is a very normal and common course for things to get fully better after some time too - so hang in there Jayce, I'm still keeping you in my prayers and believing in your recovery! All prayers for me too at this time very much appreciated as been struggling a little this last few weeks.
You WILL get the breakthrough and victory with this Jayce - I am 100% convinced of that, trusting in God, and even if it can't be seen just yet remember God is working behind the scenes on things to come good at the right time for you.
Craig
g24686 Jaycee192
Posted
From what I have heard and seen most mono patients don't actually have the usual mono symptoms. The only thing else I can think this could be is anxiety this is due to the floating hand and swallowing issue. However, since your blood work came back positive for mono you can rule that out. Make sure to get plenty of rest, call your doctor if you experience any new symptoms, if you start to feel a sharp pain in your stomach area go to the hospital. Make sure to continue to eat healthy and get plenty of fluids.