My EBV Story: Any one else similar?
Posted , 30 users are following.
Hello. I started having weird symptoms early august, with weird off balance issues, weakness in legs and leg muscles, went from one leg to the other, followed by arm weakness, nerve pain, weird vision issues, head aches, stiff muscles, joints, tingling, twitching all over body wide, the twitching can be non stop at times, chest tingling, night sweats, cough, dry eyes in morning, facial muscles weakness, sore jaw, sore throat, swollen lymph nodes. I mean you name it. My nervous system has felt like its been a wreck for 4.5 months.
Ive been through the ringer for neuro exams, MS, ALS, EEG, EKG, EMG and Nerve Test, MRI's, CTS of my brain, CT of my chest and pelvic region, spent thousands of dollars, only thing that has been positive so far is EBV blood test. Literally thats it. The twitching is what set off my severe anxiety though, thats what set off my severe anxiety about ALS. This made me a wreck, started losing weight, not eating, slowly not interacting with my wife and kids, the fatigue, pain, weakness, all of its so debilitating. Not to mention i have to still work a full time job because i have a family to provide for. How are some of you coping? I'm 4.5 months in and i don't even recognize myself, my personality is not the same. Outside of my PCP saying just much rest, it could be CFS, what are some of you doing to treat? Just vitamins and eating better? Does anyone have a story like mine with nerve/neuro symptoms? I cant do a year or two of this, im struggling at 4.5 months.
1 like, 51 replies
teri19417 theworriertx
Posted
I had mono last yr. It took months to recover only to have a reoccurrence again this yr. I have no energy body aches & foggy brain. I'm taking vitamins along with gabapentin. Has anyone else had reoccurrences? All the Dr's tell me is to get lots of rest & give it time. I am at my wits end.
emmanuelle82161 theworriertx
Edited
Hi theworriertx,
I feel like I'm just repeating what everyone else said here, but honestly the more people there are to share similar experiences the better! I didn't know about this blog when my mono was at its worst and it really made me feel crazy having all these awful symptoms (that where changing weekly) that none of the medical people I was seeing could explain.
My biggest symptom has definitely been what we are calling 'nerve pain'. For the first four months, I was having stabbing pains in my chest every day, as well as sharp shooting pains in my arms/hands, torso, and thighs. I went to an urgent care and got an EKG, which was normal, but I was convinced I had a heart condition or Guillain-Barré or something! I started on an anxiety med because, what with the illness combined with the Covid situation, I was so stressed and scared all the time. That helped me get more emotionally stable while the physical stuff was going on, so I'd recommend talking with your PCP about starting something like that.
I'm now eight months in and have experienced some definite improvement, even though I'm not back to how I was. I still have a sore throat and jaw, and nerve pain most days, but much less chest pain and the fever/night sweats and tingling hands are gone. It's discouraging when some days you feel like you've gone right back to where you started but it really does start to gradually get better! This illness will not last forever, nor will the personality changes you've been feeling. It's totally normal to not act like yourself when you're in a crisis situation and constantly in pain. Try to have some grace with yourself, because this is truly a horribly frustrating and stressful illness, but you're not alone in it! My only advice is to do anything you can to address the anxiety, which I think is one of the worst parts, drink a lot of water, and rest as much as you are able.
Emmanuelle
jonathan55221 emmanuelle82161
Posted
i had covid in december
muscle twitches started very minimal in march and now off and on in my legs
thats the worst
had a normal emg and mri of brain
a friend was recently diagnosed w als and i am thinking covid w anxiety is what brought my ebv out with a vengence. hard time sleeping at night and been so stressed
Prayers for all of us affected
jonathan55221 theworriertx
Edited
id lovd to speak with you directly
i literally have the exact same things going on
not sure if we can msg private on here
i am staying positive EBV is no joke and can wreak havok
hope and prayers you are getting better
theworriertx jonathan55221
Edited
hey, buddy, just saw your message. im still hanging in there. its been 2 years since all the weirdness started. i still have neurological things happening im not 100% better but not worse either. how you doing these days?
mia09164 theworriertx
Edited
So,i have one question...i have EBV virus detected,second time after 10years. I want to ask anyone how had it, if you had vision problems? i have so many neurogical problems,and now vision. All my test came back clear. i visited 4 neurologist and 4 oftamologist everything is fine but i cant see like before. Bright light make me feel like I am in some film not in real life,and some far away things lok so blured. Please let me know if you had vision problems because od EBV
theworriertx mia09164
Edited
yes. my vision has been different since everything started. Your problems sound similar. its almost like my eyes have sometimes issues focusing yet when i go to eye doctor they think they are ok. my vision has been weird since all my issues started. some days its better some days its frustrating. i also have neurological issues still as well like muscle twitching and muscle pains in body
mia09164 theworriertx
Posted
i dont know what to do because these is so terrible...i can see all lines on tv,on my phone,i cant see propely and when I ask doctors could it be from it they dont know...when i close my eyes i have light show,during day I cant go out brcause everything look so differenr,blured...and also tinitus in my ears...i dont know ehat to fo I am so said,i cant live like this,sitll lookong what it could be,I am so afraid of MS and some other illnes...
theworriertx mia09164
Posted
MS would show on MRI and neuros can find it. my aunt died from MS in her 60's. MS doesnt hide if you had MS docs will find it. I would keep working with your doc
mia09164 theworriertx
Posted
i have eyes problem but it is constant,when I am directly under bright light( like outside) my vision is so blurry. i dont know what to do,i checked 5 oftamologist and 5 neurologist but nothing come up. few days ago they tested me for mononucleosis and coxacie. it is positive,for mononucleosis is second time. i also have pins and needles into my feet,bfs and this with eyes. i was sure that is ms but all my MR were clear. this vith vision is so terrible brcause it is constant and i am not sure is it from m9nonucleosis,it is like one month already. also eyes floters,but this with blurry eyes is so dificult. do you know about this something ore someone that had same problem?
theworriertx mia09164
Posted
i have everything you described đŸ˜¦
i have BFS and the eye issues.
there is a support group on r e d d i t called BFS you can get more info
mia09164 theworriertx
Posted
for how long? so how you deal with vision problems? is it constant?
mia09164 theworriertx
Posted
also doctors dont know here anythinh...when i asked them can it be from mononucleosis they say: well everyone is diffrent...also I am positive for mononucleosis but my regular lab test are fine
mia09164 theworriertx
Edited
and did you have light sensativity? when it is dark my visin is better but when is sunny it is really bad
theworriertx mia09164
Posted
yes i did! i feel like i have to wear sun glasses outside way more than i ever have
mia09164 theworriertx
Posted
i never had to wear them before,but know i cant see proppely without them,everhthing look unreal,blurred,difftent...oh,i am soo depressed because of this,dont know what to do
shay229900 mia09164
Posted
i am going through the same thing with many more terrible symptoms! The doctors keep saying my eyes are fine also. i was diagnosed in april
shay229900
Posted
also its so hard to describe whats going on because i can see but i cant at the same time
mia09164 shay229900
Posted
same as me...i am not blind like I cant see where to go,but everhthing is like more light colorted,blurred sometimes,i dont know what to do...when i look at distance is blurred,when I am outside on the sun same...what sbout you? is it constant?
shay229900 mia09164
Posted
yes its like my eyes are having a hard time focusing in sometimes and blurry alot. Any type of bright light just makes my vision horrible. i get some relief at night time. My eye problems were my first symptom. Ive had only a few days since april that my vision was ok.
mia09164 shay229900
Posted
i dont know what to do with that,but for me it is terrible becaise i am not able to do my regular things,and doctor said that mono cant couse somethimg like this but what it is than? my mono is reactivited after 10years