Need to Know: The Link Between the Epstein-Barr Virus and MS

Is MS hereditary?

I had mono at 18 years old and was diagnosed with MS at 29 years old. Medical medium, Anthony Williams talks in depth about Epstein Barr.

I am 54..living with MS..BUT I NEVER HAD
MONO.

I had mono when I was 15 was in 1993 was sick for 30 days straight was terrible. Diagnosed with MS in 2012 but had it like most people well before being diagnosed. My Dr told me about this at my last visit he said this was one of the breakthrough things from the main conference in Germany Last year now.

I had EBV at age 18 in my first year of Nursing School. It wasn't called that then but rather it was considered to be Glandular Fever. It was debilitating and painful and apparently required isolation. This was in the 1960's and about that same time my mother's cousin was diagnosed with MS - not a disease we understood very much back then.
My own PPMS diagnosis was not until 2003 at age 61 so it seems genetics plus a lurking virus finally ganged up on me!

Was diagnosed in August of 1973,at age 18 symptoms ,fever, sore throat , fatigue and swollen glands, was bed ridden for nearly 3 months. Since then, I have always had a huge fatigue problem. I was diagnosed with MS at age 47 in august of 2002.

I have RRMS. I had cold sores on my mouth since childhood and had mono as a freshman in college. I inject Plegridy every two weeks and on that day I have to take Valcyclovir to avoid a terrible outbreak of cold sores. I also (occasionally) will have a 104 fever (no kidding!) and terrible chills as reaction to Plegridy. Would love to take Ocrevus infusion every six months instead, but I already have a high risk factor of breast cancer and am worried about a bad reaction to the infusion, as well. No one ever made the connection before to me about possibility of virus and mono leading to MS. Anyone else with similar background and reactions to Plegridy or using Ocrevus?

Yes I had a severe case of mono at age 16 in 1970. My tonsils were removed because they were thought to harbor the virus. (Probably debunked now). I was diagnosed with MS in 1982.

Hello, why not test children /teenagers if they result EB positive? Mothers with EB and similar, pass on to their babies at delivery.

Yep, I had mono at the age of 14. I was diagnosed with MS at age 52. I have done an informal survey of people I know with MS and have found a 100% incidence of mono. Granted, I don't know that many people, but I am convinced the link is real.

I never did receive the mono diagnosis, but when I was 15, I was bedridden for a week. I couldn't move without crying, my lymph nodes were swollen, I had a sore throat, a fever, etc. I don't remember having a rash, but what I do remember is it was hard to move my head. I always wondered if I had meningitis or mono. My local doctor in my town sent me home with an antibiotic (didn't help), and I went back to school the following week still feeling lousy. This was in 1987. In 2006, I was diagnosed with MS. I look back now and see signs of MS prior to the diagnosis. No one in my family had MS. I have one cousin with rheumatoid arthritis who is a year older than me.

I had mono in 1971, age 18, and had my first symptoms of RRMS in 1985, age 32.

I had a severe case of Mono at age 18. Signs & symptoms including Definitive MRI at age 49 but not diagnosed until age 56. Also have 3 - 1st cousins on maternal side with MS.

Diagnosed with mononucleosis in 1975 at 16 years old. I missed a month of my sophomore year of high school, taking lots of antibiotics. Diagnosed with MS in 1988 at 29 years old. I have always suspected a connection. I am glad someone is looking into this.

Yes had mono at age16 (cold sores since childhood also), dx with MS in 2003, in my 40’s but had symptoms since 1996 at least. Both my mother and aunt have/had MS.

I am a 73 yr-old lady who was diagnosed with borderline Lyme & borderline MS in 1991. The Western Blot test revealed I had a bit of Lyme disease, and was treated for the Lyme with intravenous Rocephin, a powerful antibiotic, for 6 weeks with no bad side effects. My results during & after treatment were excellent! (I felt much stronger & healthier than any drugs I took for MS!) At that time, another doctor did a spinal tap & said I had MS. I was on Avonex over a year & then switched to Copaxone. Neither effected any significant change. Both claimed to reduce the amount of relapses by only 30% in RRMS. I thought, “What about the other 70%? I asked doctors “How do we know it isn’t MS going into remission on its own? None had any answer. Pharmaceuticals earn billions of dollars on those MS drugs designed to treat only RRMS yet are prescribed also for secondary progressive MS, as well!

In 1980, I had optic neuritis in my left eye & was treated with oral prednisone which could make it worse, according to MedLine. Oral prednisone was supposed to be taken along with intravenous prednisolone! In 1982, it came back in my other eye & was mistreated the same way, with just oral prednisone!

In 1990, I was a in a car accident with my husband. We were okay but, nevertheless, it was a traumatic event. In 1991, I was in rush-hour traffic when double vision kicked in. I drove home with one eye shut. I underwent a battery of tests for MS. While being treated with intravenous Rocephin that same year,my double vision went away! I’ve had Rocephin two other times (different years later) with the same great results.

In 1996, a driver rear-ended my car on the Taconic State Pkwy, went into a spin & hit a sign. I was shaken but okay. The following year, I was doing exercise with my work group when my left leg became weak. In 1998, I went on full-time disability.

I was hospitalized with mono in grade 8 - I remember being very ill — I was later diagnosed with ms at 21 — my oldest sister who was also diagnosed with ms at 21 never did have mono during her lifetime although she had rapidly progressive ms and passed at 38

I was diagnosed with mono when I was 17 and I never felt “right” after that. I couldn't shake the debilitating fatigue that went along with the virus symptoms. I had my first symptoms of MS when I was 25 but never went to or even told my doctor. Severe symptoms returned two years later at age 27 and I was diagnosed immediately.

I’ll be 47 this year and still hanging in there. I’ve always thought the virus that causes mono had something to do with developing MS.

I had mono at 16 and was diagnosed with MS at 50. No MS in my family, either side

I had mono in 6th grade.I was only out of school for a week or so. I dont remember it being too bad. I was diagnosed in 2016 for MS at the age of 43. My father had myasthenia gravis. Which, according to his doctor is like MS. He had polio when he was a kid. Dont know if my father having polio has anything to do with with MS, but I'm checking into it.

It's like someone has already written my story! Mono when I was 14.MS diagnosis at 39 but had symptoms long before that.

My daughter was very ill with EBV in spring of 2006. She tested negative for the mono stat, but her EBV was marked with an X in the column outside of "high" column. Thereby showing the EBV was very high. She never developed mono. About a month later she lost her vision in her right eye. I pushed to understand why, she was 17 at the time. After three months, a final tap, five negative MRI's, we underwent a 3TMRI, and there they were. Five lesions in her brain, two also in her cervical spine. Diagnosed officially with MS in fall of 2007. She has done a course with Copaxone, but discontinued it due to having pretty awful side effects with it. She has taken Magnesium and 30,000IU's daily of Vitamin D., every day with her Neuro's follow. She has had a couple of minor relapses, but she is doing well and will be 30 in May. I suspect a viral component and having low Vitamin D allows the EBV virus to spread to the brain crossing the blood brain barrier and into the spine. Not a doctor, but read about those being treated with high levels of Vit. D., for MS. It is inspiring. I wish all of you patients, caretakers, all, the very best with this difficult disease.

I contracted mono after mistaking another's glass for my own. I could never figure out how I got it, because I just do not eat or drink after others, but when a mutual friend told me that "Wow, that's odd, because the hostess had mono." Oops I guess the purple glass and not the blue one, was mine. :( Apparently she thought she was OK but was still contagious. Anyway, I was 30, and I was oh so sick. I ran a fever for 4 solid weeks and every lymph node on my head swelled up, making me look like I'd been beaten. And my spleen started banging around under my ribs. Good memories! Not. Then about 4 years later, I had another shorter...thing, that looked exactly like what I'd had earlier, it just didn't last as long. EBV reactivating? I'll never know but suspect yes. By 2006, in retrospect, I was having some super mild symptoms that could have been the first ticklings of MS. And 2006 and 2007 were 2 years of total stress as I lost my job and my mother died of ALS. By 2011, those symptoms were intermittent but not so mild. A few years later, I was dx'd at 52. Oh, and I'm pasty white, redheaded, was D deficient, and for the first 18 years of life, was a (secondhand) smoker due to family members. Yay for the 60s and 70s right? So all the potential pieces were in place. And boom! MS.

I was diagnosed with mono when my son was 4, he is 12 now. Diagnosed and treated for vitamin D deficiency about 6 years ago. Diagnosed with MS 2 years ago:)

I had mono when I was 10! Was so severe by the time they realized what it was that I spent a month in the hospital and had to be home schooled (horrible fatigue) for my entire 3rd grade year.
Diagnosed with MS at 31 but in hind-sight had symptoms beginning around 25.

Also have extreme Vit D deficiency and hashimotos.

I had an old small town Dr when I had Mono.. he told me that because my body and immune system had to fight so hard when I had Mono, that it would fight like that forever. I now find irony in that.. I rarely ever get sick, but when I do.. it's a crusher, never ever a "cold". Adding to that, MS treatments lower our immune system so it doesn't attack... I absolutely believe there is a link between EBV/Mono and MS.

I had mono when i was 14. Also had shingles in my youth, and whooping cough in grade school (despite being vaccinated). I'm pretty sure my immune system has been grumpy since my birth, lol! I was diagnosed with MS at 37 years old, and the lesion load I had meant it had probably been around for a while. That was nearly 5 years ago. Both my daughters had mono in their teen years, so it always freaks me out a little to think of the correlation. I just tell them to be mindful of their health and diet, as that is keeping me pretty stable on this journey so far.

Mono at 16 (1972) Dxed with PPMS at 57 (2013). I remember the swollen glands pain the most, and being out of school for a month.

I do not have anyone in my family immediate or otherwise that have ever had MS. I have a very Large family (1of 7)
BUT im the onLy One tO have had mono

I was very sick with mono when I was about 5 or 6. The doctors at the time didn’t recognize it as such because it was considered a little more unusual to exhibit all the symptoms at that young age. I remember my mom trying desperately to wake me up but I felt stuck in a dream. The doctors at that time (it was in the 80s) told my mom that they felt my mono may come back or linger, causing more symptoms throughout my life. I’ve always had that in the back of my mind. Many of my health woes over the years I’ve attributed to my mono as a child. But, I’ve become increasingly aware that I have many, many symptoms of MS. I’ve not been diagnosed but I would not be shocked in the least. And this connection between my mono and possible MS symptoms prompted me to start searching if there was really some connection between the two. So, I’m very interested to see if a link is found. Oh, and I also have HS which is autoimmune. I believe it is very common for HS sufferers to have other autoimmune diseases.

My sister had Mono in College in the 1970's and was sent home. I was l0 years old at the time. I do not believe I contracted Mono from her, but I was diagnosed with MS at 40, even though I believe (and so do my doctors) I have had it since I was 18. I am now 57 with RRMS. I have one Aunt with RA but no one else on either side of the family has an auto-immune disease. Hopefully within the next 20 years or so, they will finally figure out how this disease got turned on in our bodies!

My daughter had Mono about a year ago at 17. She was just diagnosed with MS last month at 18. Zero family history of any autoimmune diseases. Came out of no where. I wish I had understood this link earlier. It staggers me to realize that even with this being quite well understood, no one ever mentioned it when she had mono, or even thought it was significant when she was dx’d with her MS. We told multiple Dr’s several times that she’d had the Mono a year ago. They acted like that was inconsequential and just kept asking about family hx of autoimmune diseases, surprised it was negative. Whether vaccines, plasmapheresis post Mono, etc, some way ought to have been found to interrupt this by now. If they really did see a link back in 1993, why is the medical community hardly breathing a word about this and why has research not provided some stopgap? This could be life changing information and it seems little has been done with it. I don’t know what else may have contributed to my daughters MS, but I am convinced the EBV is the major culprit in her case.

Hi Tamara, I had a severe case of mono when I was 18 in 1983 and was extremely fatigued for many years after that. About 10 yrs later I started having memory problems and at age 30 they did an MRI and said I had MS due the lesions in my brain. I have not ever had any further MS symptoms and had another MRI 5 years ago to see if the lesions had increased. They still said I had MS but it didn’t show the lesions had increased more than what they would expect for a 50 yr old. I currently feel healthy and just do an annual physical with my doctor. Do you have any advice or thoughts if I should be seeking any other care or have further medical analysis?

Mono at 18 yrs old; MS diagnoses at 40.

Hey

I had saw something online about the connection of mono and ms. I had glandular fever 11 years ago when I was 17. I suffer pretty bad from anxiety and I have got myself very worried that this means I now will get ms!

Are there lots of people who have had mono but don't go on to get ms?

Thanks

I am in this exact same boat