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Does EBV cause Neurological Symptoms?
Hello! I am a 44 year old male and have recently been hit hard with neurological symptoms that I am wondering have been caused by EBV flare up.
My first symptoms were 14 years ago. I was under a ton of stress at work and had had some stressful life events. I would come home from work with an “out of body” feeling just from stress. One day at work I felt my skin crawling and then started having Fasciculations all over my body. My neck was extremely tired with a feeling that I needed to rest my head on my hands to hold my head up. I had a feeling as though I couldn’t talk even though I could. I also noticed that my muscles would shake upon use. I was still strong but lifting things would cause a shake in them. I went through various tests (mris, EMG, etc) and everything came back normal. I was finally diagnosed with fiber neuropathy of the brain. They said it might get better but maybe not.
I am a performer and sing at various places. So through the years I have noticed that when I have a stressful performance (singing at NBA games, events, etc) I have attacks on my body afterwards (during periods of high stress). And it seems to damage the area that the attacks happen. It’s like I will get hammered hard by a twitch that might stay for a couple Days on one area, but then it will stop and then I recover. Well about a month and a half ago I had to sing at a funeral and then lead an event the following day which was big time stress. Afterward I had another attack and my arm and leg had weakness which was normal. But, this time it didn’t go away after 3 or 4 days and I panicked. I had a rush of anxiety go through my entire body and then started having intrusive thoughts that are clearly not me.
Current symptoms are:
Feeling of weakness and literal numbness in my toes and the tips of my fingers, more on the right side. My tongue gets sores on the end and is numb. I have swollen lymph nodes that come and go under my arm/arms every 2-3 months. Brain fog, dizziness, shakiness when I use my muscles (lifting),aura migraines, trouble swallowing (which really scares me). A feeling of slowing down in my whole body, feels harder to smile, etc. About a year ago a wellness clinic asked if I I had had mono and I did at 16 years of age. They did the IgG, etc band test and said that it was positive for reinfection. They retested 6 months ago again and said it was still activated. I am currently seeing a neurologist who is doing an MRI in a couple of days They also have me set up to do an EMG test in all 4 limbs in April. I told them about the EBV reactivation but they don’t believe it. They said if you’ve had mono before everyone will have positive bands.
They think it could be BFS that is aggravated by stress at this point, but, they can’t explain the sores or swollen lymph nodes. And my numbness and symptoms aren’t going away like they normally do.
My thyroid panel was low at my primary care doctors, but they acted like it was nothing as one marker was actually in the red and the other two markers were at the very bottom But within range (3rd generation TSH).
Has anyone had symptoms like these from an activated EBV case? I have included a picture of the round tongue sores So weird.
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I have did enough research hahah online and spoken
To my doctor and his PA . The information is so scarce about EBV. Tons on chronic fatigue which I thought was just “a thing”
Until it happened to me . I
Have had all third test because I had never had headaches before and bam I had two last year that I couldn’t turn on lights and my mri came back perfect . I’m on two different drugs to keep me awake and going. I have had anxiety all my life. Wow taking prescription speed .. talk about improper paranoid thought plus I had to learn to not cross boundaries and filter out what I was saying . So far all
I know this a rare disease , their is no cure and it’s much more common in Asia and I think china or Japan . Theirs a lot of stuff to read but you get to the end of it and it’s someone trying to sale you BS cures .
@minnerhead1 Hey- I have, or have had at some point in the past, all of your symptoms. After years of diagnoses ranging from MS to fibromyalgia, I finally received a correct diagnosis of Sjogren's Syndrome (SS) after a doctor tested at just the right time for it to show up when running bloodwork for rheumatoid arthritis (RA). (SS is in the same class as RA & lupus, but often only shows up in bloodwork when in a flare up.) I couldn't see your uploaded pic, but with SS, mouth/tongue sores are common. I'm not saying that's what you have, but you never know. That being said, only recently, after going through an incredibly high stress time in my life, I was having all sorts of neuropathy (including pain, muscle spasms, unscratchable itchiness) and extreme fatigue. The fatigue is why I saw my doctor, who ultimately tested for EBV, which I had reactivated. All of the symptoms you describe could be chronic EBV. Since your current doctor didn't consider the possibility of that, I'd recommend a second opinion. The problem I am finding is that because doctors are only just now beginning to test for EBV, there aren't many MDs treating it. Neither my primary care nor rheumatologist had any recommendations for specialists, so for me, it's just been a time of treating symptoms and giving myself time to rest and recover until I feel more like myself. I'm still looking for specialists, but so far, all I'm finding are functional/alternative medicine groups, who don't take insurance. There's no cure for EBV, but it cycles in and out of remission, really coming out in full force during stressful times. I'm sorry you're going through it, but maybe knowing all the freaky things you're experiencing aren't all in your head, and are happening to other people, could give you some comfort.
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2 ReactionsThank you so much for the reply. I will look up Sjogrens to get some more info on it. I sure hope you are feeling better and are getting some relief from your symptoms. 🙂
Hi, I wanted to see how your journey to figuring out your symptoms is going? A month ago I started having many similar symptoms and I think I’ll be getting an mri this week. I was told I recently had EBV. But I’m also showing high ANA (auto immune) markers. I’m sure my stress is adding to my symptoms but it’s so hard to not be stressed when I don’t know what’s happening to my body!
Did they ever do a lymph node or bone marrow biopsy? I had an enlarged spleen and lymph nodes all over which were detected by a CT scan. It took numerous doctor visits, hospital stays and procedures (over 33 in the past year) to determine it was EBV related. Very rare and no specific treatment protocol. It affected my liver with episodes of jaundice. Just had 4 weekly infusion treatments of Rituxan which resulted in no detection of EBV. Later this month I will get another PET scan to see if nodes are reduced in size. No cure but manageable. Don’t stress over it but pursue finding a good hematologist. I didn’t have any symptoms you are having so everyone is different but I do have RA and thyroid disease. This is all autoimmune related and seems to be popping up more often now after Covid. Praying you get relief!
Are you going to an infectious disease specialist? I recommend because I show high EBV levels along with my Lyme disease and to be honest I don’t see any difference in my symptoms.
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1 ReactionYes, a specialist for Lyme disease only in New York. A guru and top of the line physician and is researching constantly to help those afflicted. At the moment I cannot really see a significant difference in my symptoms altho the blood work showed a very high out of range status for this virus. This happened once before and I’m inquiring if this is just a coincidental reading for infectious disease for lyme.
No. These types of tests are not related to Lyme disease- it is detected in blood only.
I had a transplant on 9/11/11. I have to hold up my head in my hands so too! My muscles cramp doing my chores....ugh! Suzan
@shersidhe I felt like I was reading my own story. My current diagnosis is fibromyalgia, but I am wondering about that now. About 10-15 years ago they tried to pin MS on me; ruled out. Then it was fibro; current. Now I had blood done and 2 weeks ago I had blood tested and the EBV Nuclear Antigen Ab, IgG is >600. I'm curious about your diagnosis and @minnerhead1 because I have or I had symptoms you both experienced. The tongue sores caught my attention. My Rheumatologist did not know what to make of it. However, when I stopped taking Lyrica and Cymbalta they went away and I haven't had them since. I find this community invaluable because it always solidifies what I knew, but was alone. It is unfortunate, but the individuals I know with some sort of immune disease like Lupus, MS, Fibro, etc have "classic" symptoms. It seems mine are a little of "this" and a little of "that" sort of thing. Did either of you have mononucleosis at any point in your life? I did when I was 15 and I wondered if you did too.
Blessings,
@luv2lrn
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