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I have recently been diagnosed with EBV. I didn't present with the "normal" symptoms. I first experienced joint pain, then muscle pain, followed by extreme fatigue and muscle weakness. That lasted for about a month, then I developed sharp electric pains in my nerves and associated muscle weakness and numbness that comes and goes in my arms and legs. The nerve sensations have lasted for about 2 months. I seem to be healing
As I haven't experienced as many sharp electric pains, just numbness and tingling. I have been to a neurologist and have had an MRI of the head and neck which came back normal. Has anyone ever experienced anything of this sort of nature? I've been experiencing symptoms from EBV for 3 months now.
It's also important to note I was tested for Lyme and other blood work was done. Everything was normal except the ebv (which showed I had either contracted ebv in the last 6 months or it was
A reactivation) please help! Would love to know I'm not alone.
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First Helper DavyJones84
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replied September 26th, 2013
I have been struggling with the same stuff. Mine started about six months ago with stiffness in my arm and leg - especially when I was in a stressful situation. I have been tested for Lyme three times with a positive result, a negative result, and an indeterminate result. The only thing I have definitively tested positive for is reactivated EBV. I still don't know if I have Lyme as well. I have muscle aches, tingling in my arms and leg, hand stiffness and tremors, and a very stiff sore neck. I was so nervous about something serious neurologically I went for an MRI of my brain and spine to rule out MS, and today I had an EMG test. Thankfully all negative. You are not alone and I recommend you look up a posting from a guy named Sporque from 2011. I keep going back to his postings when I need a reminder that this will run its course. Good luck to you.
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replied September 27th, 2013
Thanks so much! I have been feeling so alone with this! Neurologist just shakes his head. I'm going to a rheumotaligist today. I will let you know what he tells me. I have now began experiencing burning pain in the top of my glutes and sometimes me feet and calves. They can only think maybe some type of autoimmunity like a mild guillen barre. Good luck to you my friend! You can email me if you come across anything.
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replied September 29th, 2013
Check out Sporque's message in the topic "Adult with Reactivated EBV". It will reinforce the fact that others have been down this road and have recovered. Stay positive.
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replied October 4th, 2013
Your waisting your time going to all these doctors. I was diagnosed in late December 2012 I also experienced a lot of the same symptoms you described. Some of the symptom can really freak you out there things we've never experienced in our lives. The virus difintely does a lot to your body. I also experience that burning sensation which freaked me out! Mine felt like someone spilled a hot drink on me.. My doctor sent me to a neurologist and rehumatologist which did absolutely nothing for me but take my money lol. I still from time to time experience some tingling but only in my feet but its more rare now that it happens. I personally sought the help of a natropath which in my opinion has helped a lot. I would say I'm improving quite well the only issues I would say i have left is occasional fatigue, tingling and lately brain fog it's just a weird sensation I feel in my head not quite sure how to explain it because it doesn't really hurt its just annoying but I would say I am 90-95% better.
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replied September 30th, 2013
Thanks. Can I ask you what where your IGG and EBNA levels? My IGG were 7.5 (7500) and EBNA greater than 8.
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replied September 30th, 2013
Sure. It looks like labs use different scales, so I will show you my numbers compared to the normal range on my report. My VCA IgG was 395 and my EBNA was >599.9. In both cases the normal range is 0-21.9. My EA IgG was 37 with a normal range of 0-10.9.
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replied October 22nd, 2013
Hello. I had mono a year ago. I had all the neuro symptoms you have now. Tingling in hand a feet, pain all over, twitchin. I did also MRI to rule MS. And all of my test came negative. the frustration comes when doctors tell you that mono doesnt cause this. but i think it does. It has been a year and i feel almost back to myself. I am 27 years old. I still experienced the tingling and pain. That hasn't gone yet. I dont feel weak. I do exercise and do regular stuffs the way i used to do. I traveled also. but the pain and tingling and twitching I still experience it. It is so frustrating. I did got much better on a diet change. juice veggetables. carrots, beets, green juices. I cut gluten and sugar. The only sugar i have is from fruits and honey. Also coconut oil is very good. I cant understand why i still have the joint and nerve pain. I am trying to figuring out what is causing it. Is it mono , did I develop something because of mono. I dont know. that is the only symptom that I have left. the NERVE PAIN. I hope you guys feel better. it takes time. some people recover sooner than others. I felt horrible for 6 months. After that I started to improve and now i am almost back to normal except for the nerve pain and tingling.
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replied March 3rd, 2016
I know this is an old thread but was hoping to get folks to chime in how they are doing now and if they learned anything helpful along the way. My symptoms are nearly identical to what jecca86 posted.
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replied March 23rd, 2016
I'm having the same. It's horrible. Like a nightmare I can't wake up from. I hope this gets better sometime soon. It's like my entire nervous system is being ravaged.
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replied March 25th, 2016
Hello Acydgod and Jwark.. Just wanted to share my 2 cents as i am also struggling and have been for almost 6 months now.

My symptoms have been nerve pain, tingling - except my tingling feels more like goosebumps but without actual goosebumps that i can see.. this happens mostly on my legs but also occasionally on my scalp and arms.
I've been experiencing extreme anxiety and weakness. My symptoms come and go. Recently i had 6 weeks of feeling almost back to normal, and then i was hit again with a relapse and i feel terrible. I'm supposed to be going overseas for a holiday in 6 weeks and i'm praying that im going to be in a good phase because right now i feel like i'm constantly on the verge of a panic attack.

This has been absolutely hell and totally derailed my life for the past 6 months. I'm so sick of constantly being sick and having to explain my weird behaviour to everyone.
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replied March 30th, 2016
Hi! I am having the samw symptons for the past 7 months I believe.. Constant muscle twitching/spasms, I can see my skin jumping like theres something trying to come out; random tingling in feet and hands; random tiredness; tight pressure in feet and hands, my muscles feel like I can relax it sometimes.. Everything is weird and I haven't felt like myself in a while.

How old arw you guys?? I'm 19
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replied March 30th, 2016
Pablozedd, I'm 26. Have you been diagnosed with mono?
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replied April 28th, 2016
Hi -- I also have the same symptons as others in this thread.

While I do not have any answers I did post the Sporque thread referred above.

Keep a watch to see if anyone answers or post there since it seems to be a more active thread: http://ehealthforum.com/health/user_profil e_752671.html

Good Luck and let me know if you figure anything out.
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replied July 15th, 2016
I myself was told yesterday that EBV reactivated. I've been through tests,MRI,to also rule out MS. I have the same exact symptoms as everyone has mentioned. This has been going on since middle of April. I can only hope it gets better,although subsided since then,still have many of the same symptoms. The neurologist said it takes time,let's hope that's all it takes.
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replied August 5th, 2016
Hey all. How is everyone getting along? I have had mono for two years. two years this september. and let me just say that things do improve. I do still get relapses but I am thinking it is because I push it too much when I feel good... which, is hard not to do. My relapses consist of neck pain, muscle fatigue, weakness, and of course, I have the tingling that you guys mention. I am thinking, in my own conclusions because doctors dont have a clue, that the virus settled within my spine and affected my nervous system. Things are definitely better than a year ago. But, the process has been very slow. For those of you who are going thru this, don't give up... it takes time and its a very slow process of recovery. I am confident I will feel better for days on end without relapses but it will be more time.
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replied September 12th, 2016
All of you are just about right! Doctors do not know what really happens to the body when you have ebv/mono. The virus can lay dormant for years and then reactive during times of extreme stress. I've been having similar symptoms to those mentioned in the posts. Nerve pain, neck pain, tingling/burning through my body. I was reading a book called the medical medium by Anthony William and it has valid points. It talks about all the stages of ebv and what it can do to the nervous system. Check it out! My doctors have run so many tests and I'm just freaked out and tired at this point. But there is hope! This book has a regimen that I'm starting to follow. I think it will make a huge difference.
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replied September 15th, 2016
Hey all I'm experiencing all of these symptoms also! It's driving me crazy my legs feel like they don't belong to my body Sad my mouth also feels sore often does anyone else get this? I've been suffering for 8 weeks now! I very rarely get a good day but it changes from hour to hour totally bizzare illness.
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replied November 3rd, 2016
I realize this board hasn't been active in a while, but I am begging for help and guidance. I have literally been flat on my back for over a month now. Positive, high Epstein panel a couple of weeks ago. I've never been so sick in my entire life. I literally feel like I am dying. My symptoms: low grade fever (99 too 100 degrees at all times), extreme weakness, numbness and tingling in all limbs, stiff and achy muscles all over, chest pressure, spleen and liver pain (all Liver Function Tests are normal), pressure in my head, stiff neck muscles some days, difficulty swallowing, I do feel some lymph node enlargement in my throat and neck but no sore throat, however my voice is weakened, weird fluttering nerve pain all over. I can't be upright very long or it feels like I have a 200 pound block on my shoulders pushing me down. I have had an MRI of my brain which was negative for signs of MS. I have an appt at Mayo Clinic in two weeks.
Has anyone had symptoms like this that have healed or gone away? I'm starting to think I'm going.to be like this forever. Lost my job, and so scared going into the holiday season. I have 3 children and I am basically unable to care.for them right now.
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replied October 6th, 2017
Mono and EBV symptoms + helpful treatments
Hi, I know this is an old thread but i was wondering how you are feeling. I was diagnosed with mono a few months ago, after getting strep throat every month for a half of a year, and swollen lymph nodes. By the time I got diagnosed, I felt like you did. Now I'm through the bad fatigue, but i'm having weird neurological symptoms of joint pain, recurring migraines, muscle twitching and numbness of my face when I stand up. From what I'm reading, this is a all stuff that others experience, but it's frustrating to say the least. I believe one thing that's helped me has been getting UV + Ozone blood treatments, as well as anti-viral IV's. Also, my symptoms seem to get worse when i eat inflammatory food like sugar and gluten, which I try to avoid anyway, but when I do eat them I get the nerve symptoms again. I hope you're feeling better.
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replied March 12th, 2017
Hi guys ... I have had EBV for a year and a month now... fatigue , brain fog, weird sensation in my head , and nerve pain tingling, and ringing in my ears . It has gotten so much better but still existing! I went gluten free and sugar free and try to juice as much as possible. Hoping it goes away soon .. how long did this last for you guys???
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replied May 21st, 2017
My daughter who is 12 was diagnosed with mono at the end of January 2017. She was sick at Christmas with a cold, went into pneumonia, was on strong antibiotics for 2 weeks. Finished the meds and still was not feeling. Super tired, all she wanted to do was sleep. Took her back the Dr's. They did blood work and found out she had mono. She was off school for awhile. She went back to school in March.

9 weeks ago, she woke up and her hand was shaking/tremor and she has severe pain the muscle at the top of her arm.

We've seen a orthopedic specialist, nerve specialist and a neurologist. She's had lots of blood work done and a brain MRI, everything has come back negative. She has taken a nerve relaxant but it didn't seem to do anything and she said it made her head feel weird.

Orginally the orthopedic Dr said the mono has most likey attacked her muscle causing her nerve to react but we saw him on Fri but he's not so sure now. He said it shouldn't be going on this long. We told him she still gets pretty tired. Some days she'll sleep 13 - 15hrs.

All the Dr's are at a loss. I still think it's all relating to the mono, given the timing of it all and reading the comments on this forum.

Has there been anyone with this particular issue? Pain in the top of your muscle, can't even touch it, when you do, you can feel the pain in your thumb/fingers. Constant Shaking/tremor hand. When she does anything physical with the arm, after it hurts much more and shakes/tremors quite badly. She has been wearing a wrist support as well as a sling.

We're hoping it'll go eventually go away.
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