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

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


ms in moderation

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about multiple sclerosis? Visit our forum.

This week’s question is inspired by the forum topic “Can there be a connection between Epstein-Barr virus and MS?“, from April 26, 2018.

What we know about MS and the Epstein-Barr virus

Research published in the Journal of Neurology, Neurosurgery, and Psychiatry in 1993 first hinted at a link between the Epstein-Barr virus (EBV) and MS. Researchers found a statistically significant association between infectious mononucleosis — or glandular fever — and MS, specifically in those who were diagnosed by the age of 17.

Since then, scientists have learned quite a bit about the connection between the two diseases.

Join the MS forums: an online community especially for patients with MS.

What is the Epstein-Barr virus?

EBV is a form of the herpes virus, human herpesvirus 4, first identified in 1964. The infection is prevalent — the Centers for Disease Control and Prevention note that “most people get infected with EBV at some point in their lives.”

The centers report that nearly 90 percent of adults carry EBV antibodies in their bloodstream, indicating a current or previous EBV infection. The virus spreads through the exchange of bodily fluids, typically saliva, and is best known as the cause of infectious mononucleosis, also known as “the kissing disease” or “mono.” Mono is considered a delayed primary EBV infection.

Symptoms of EBV include an enlarged spleen or liver, sore throat, swollen neck glands, fatigue, fever, and a rash. However, EBV doesn’t always cause noticeable symptoms, and many who contract it during childhood may mistake it for a general viral infection.

Meanwhile, an infected person can be contagious for weeks before symptoms emerge.

EBV is only present in humans

EBV is not self-limiting, which means that it doesn’t die after running its course, but rather remains in the body in an inactive form. The problem is that it can reactivate. Once reactivated, it becomes contagious again and can lead to a recurrence of symptoms, especially in people with compromised immune systems.

The best way to know if you have EBV is with a blood test that identifies its antibodies. If you’re diagnosed with EBV, your best bet is to:

  • Use over-the-counter medications to relieve pain and reduce fever.
  • Rest to allow the body to fight the infection.
  • Drink plenty of fluids.
  • Stay out of bright sunlight.
  • Avoid kissing others or sharing personal items like silverware, drinking glasses, or toothbrushes.

How is EBV associated with MS?

Historically speaking, EBV remains high on the list of causes of MS. Other suspects include cigarette smoking and vitamin D deficiency.

However, while it’s been shown that people who have had mono are almost three times more likely to go on to develop MS, many others who have had mono do not end up with an MS diagnosis.

This means that EBV alone is not a direct cause of MS, but one of many factors which, when combined, may lead to the development of the disease.

What’s the latest research on MS and EBV?

Researchers believe that EBV may not only lead to MS through cases of mono but also by indirectly activating another viral component: silent human endogenous retrovirus-W.

They’ve also found that certain kinds of MS therapies (rituximab, ocrelizumab, and ofatumumab) can successfully deplete certain types of cells known as memory B-cells, which are known to house EBV.

A study published in Plos One in February 2018 found that EBV can infect more than just B-cells, including astrocytes and microglia, shedding important light on the pathogenesis of MS. Finally, research suggests that EBV has influence when other environmental or genetic factors are in play and can shape susceptibility and severity of MS as a result.

New treatment strategies for MS include potential EBV-specific adoptive T-cell therapies and the development of an EBV vaccine that, if administered in childhood, could potentially eradicate MS.

Have you ever been diagnosed with infectious mononucleosis? Were you perhaps really sick in childhood but did not receive a mono diagnosis? What has been your experience? Post your replies in the comments below or at the original forum entry.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

80 comments

    • Tamara Sellman says:

      That’s a good question… I understand that people with MS have a genetic propensity, meaning they are more likely to develop it based on a genetic marker, but that it doesn’t always “switch on.” I could be totally wrong about that. Still, a lot of people (myself included) have family members who also have MS. I think they’re still trying to crack that code, though recent neuroscience is making strides. If anybody knows any new developments in this arena, feel free to share!
      Tamara

      • Michelle says:

        I do not have anyone in my family immediate or otherwise that have ever had MS. I have a very small family and had most of my great grandparents untill my 20s. Never had mono but was diagnosed in 2001 with EBV. Diagnosed in 2015 with MS, after the birth of my son.

        • Tamara Sellman says:

          I think the development of MS after pregnancy is interesting… I might need to address that in a future post. Thanks for the inspiration!
          Tamara

        • Marie says:

          After the birth of my children my MS was detected. It seems that something hormonal triggered the symptoms in my 20’s. Oddly I had another child in my 30’s and nothing occurred. I was diagnosed with MS in 2001. I am 41 years old now and feel great no symptoms, that I can tell. At times I think my “normal” is not other people’s “normal” but I have accepted that.

    • Laurie says:

      I’m pretty sure that while MS technically isn’t hereditary, autoimmunity is; if one of your parents has the gene for autoimmune disorders, you probably do too. Whether or not you encounter the triggers/components that cause the diseases to flare up is another story.

      I have 4 autoimmune disorders – endometriosis, rheumatoid arthritis, Graves Disease and relapsing-remitting multiple sclerosis. I’m also suspected of having Ehlers-Danlos, which would put me at 5, which is downright silly.

      But as far as heredity and autoimmunity? Both my dad and his brother have neurological autoimmune disorders (uncle has MS, dad has MS and TM); all of the girls in the next (my) generation (me, my sister, 2 cousins) have endocrine disorders except for me and one of the cousins – she and I both have endocrine and neurological disorders (I have MS, she has fibromyalgia and CFS).

      15 years ago when I was originally diagnosed with the Graves Disease (already had the endometriosis, as did my sis) and my dad had his diagnosis too, we had an offer from John’s Hopkins to come in and be studied/evaluated to help confirm that autoimmunity is hereditary because of the prevalence in my family.

      Sadly we couldn’t afford to go – it would have been nice to have the results of all the tests they would have done (free medical genetic screening and breakdown!!!) AND my MS would probably have been diagnosed a decade earlier – I was symptomatic then, but they were ambiguous symptoms that also applied to a number of other things I have (and the neurologist I had at the time was thinking I was in the beginning stages of MG or ALS).

      But yeah, it’s definitely something worth investigating. I don’t know if the medical community has reached an official consensus on it or not, but from what I’ve seen recently just by conversations with my doctors, it seems to be accepted that autoimmunity is genetic/hereditary (I always kinda laugh when anyone says that a disease is genetic; I mean think about it – if it isn’t contracted, then by default, doesn’t it have to be genetic?). Hope that helps, hope your journey through the autoimmune/MS arena isn’t too daunting.

  1. Lisa says:

    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.

      • FB says:

        I don’t think I’d be bothering to listen Medical Medium podcasts – any website which spouts garbage about this author such as “born with the unique ability to converse with Spirit of Compassion who provides him with extraordinarily accurate health information that’s often far ahead of its time” screams charlatan rip-off merchant to me. Celebrity endorsements on any website are not a reliable indicator of whether something is real or not, and the links between EBV and MS have been documented for many years.

        It is worth reading a couple of the negative reviews on Amazon from people who got sucked into this crap – they acknowledge they were desperate but also admit now that they were conned.
        https://www.amazon.com/Medical-Medium-Secrets-Chronic-Mystery/dp/1401948294/ref=sr_1_2?s=books&ie=UTF8&qid=1548461131&sr=1-2&keywords=medical+medium

        I’d also suggest to anyone considering diving into this sort of hocus pocus stuff to seriously consider what they are risking when they put their faith in anyone who is part of the “miracle cure” department. Some of these “miracle cure” people have effectively been responsible for deaths when people get sucked in by the hype and don’t seek proper medical advice and treatment. Do a Google search on Belle Gibson – she is just one such “miracle cure” person but fortunately the law did catch up with her – there are many others who don’t get caught, and just ruin people’s health and lives. The only people who are likely to benefit from this Medical Medium rubbish are him, his agent, and his publishers. The internet has brought us many good things and much access to real information but it also offers opportunities for people to spread garbage and tap into desperate people’s desire to find a cure for whatever it is that ails them. Caveat emptor is alive and kicking in the digital age…………

        • Tamara Sellman says:

          Wow, I’ll take that under advisement (about Medical Medium). I’ve been looking for medical podcasts and passed this one up a few times, then heard good things, then thought, well, maybe… I do agree with you about the whole “miracle cure” BS. When I think of the “C” word, it’s not the one from the mainstream (ha) but the one spelled C-U-R-E. Heck, we can’t even “cure” the common cold. Thanks for your comments, great food for thought!
          Tamara

    • Connie Myers says:

      Same for my daughter. She has been tested three times for Mono and all have been negative. She was diagnosed in 1999.

    • Tamara Sellman says:

      Maybe, maybe not. I believe, from the research I reviewed, that there’s a strong argument to be made that plenty of young people were NOT diagnosed with mono in the 70s and 80s, but probably had it and were misdiagnosed or remained undiagnosed. That said, I don’t think the research is suggesting that mono causes MS directly, but rather that having mono increases your risk factors for developing it, especially in combination with other criteria (low vitamin D, for instance, or smoking, etc.).

  2. Jack says:

    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.

    • Tamara Sellman says:

      Yes, they’ve suspected it for quite some time, but the latest research seems to really show a connection. I’m glad they keep looking!

  3. Patricia says:

    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!

    • Tamara Sellman says:

      I remember that term! Glandular Fever, which it most certainly was. My spleen was ginormous and the fever was for real. I share with you some of the same components in my own disease trajectory… I have RRMS, had mono twice (1981, 1984) and I have 3 relatives on my mother’s side of the family who had MS. I think you’re probably right… between genetic propensity and a viral component, plus other factors, we’ve all experienced this gumbo outcome they now call MS.

  4. Maria Fairbank says:

    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.

    • Tamara Sellman says:

      Yes, this. I had 6 weeks of “jail” at home (it was terrible!) after my first case of mono (I had a second case 3 years later) and indeed, the fatigue has been an ongoing feature ever since.

  5. Sue Weinman says:

    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?

    • Tamara Sellman says:

      I can’t help you there (anybody?) but I do remember getting shingles at age 36, before I was dxed with MS (that was at age 47), taking Valtrex and the lonnnnnnnnng fatigue that followed.

    • John says:

      My daughter thought she had cold sores since her MS diagnosis but they where probably mouth ulcers. Vitamin b12 was a bit low so she had high dose b12 injections each month after which the mouth ulcers disappeared quickly and completely; I read in a researchpaper that b12 deficiency can be caused by MS medication preventing your gut from taking in adequate amounts of b12; Since b12 deficiency can also cause symptoms that are similar to MS symptoms I would encourage anyone to do a blood test (dont take supplements before your test)

      She was on Ocrevus but for her extremely aggressive RRMS it did nothing unfortunately
      Last autumn she had an HSCT treatment and in the two months she is home her symptoms improved noticably so we are filled with hope she can pick up her life again and finish her study (HSCT is a pretty blunt and risky last resort treatment only to be used if multiple 2nd line DMTs fail – I would absolutely recommend trying Ocrevus first)

  6. Mary says:

    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.

    • Tamara Sellman says:

      I’ve heard of that (mono harbored in tonsils). I am guessing the connection originated because the tonsils could become so swollen.
      Tamara

      • Ellen says:

        No-one that I know of in my family ever had MS. My husband has a cousin, maybe 2nd cousin, whom we learned later has MS and is in a wheelchair. We did not know about this when my younger daughter came down with MS at age 20 so we figured there is a genetic component on my husband’s side. However three years later, in a surprise to all of us, I was diagnosed with MS. I was 57 at the time and had not a clue in my family ( I am a only child but have a lots of first cousins.) So that one cousin of my husband was not an influence in my case.Both my daughter and myself have been leading fairly normal lives. I have OAB problems but that too is also an aging & post pregnancy problem and could be an MS problem too but we don’t know. My daughter’s doctor said after 12 years on Avonex that she could come off that and any MS meds . I’m considering the same now that I’m going on 71. I have 5 adult children and none of the others have MS although a couple have other autoimmune diseases which I have heard is typical with MS relatives.

        I had my tonsils out at age 5. I had a few bad sore throats as a kid but back then they didn’t have a test for strep. so could have been viral. My 2nd year of collage I had mono and spend a week in the infirmary. I never thought anything was “wrong” with my health otherwise. I was healthy most of my life. I had one major symptom (same my daughter had) and that lead to diagnosis.

        Not sure there is enough really known yet about MS and its causes and influences. Sometime there is a pattern for some but not necessarily for others. The a MS connection between my daughter and myself is that we were brought up in Rochester Ny as infants and children. My family moved to Ohio when I was in 2nd grade. After college and marriage my husband and moved to Rochester, and all my children grew up here. Rochester does not have a lot of sun and has a high population of MS patients.

        • Tamara Sellman says:

          Thanks for sharing your story. I think the challenge with MS is that it probably doesn’t have a single cause, but occurs when a “perfect storm” of conditions allow it to activate. Which, of course, makes it super complex for those researching and studying it for clues to a cause.
          Tamara

  7. Anna Maria Sifo says:

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

    • Tamara Sellman says:

      That’s a good question. Probably comes down to cost. To prove out MS, that’s going to require an MRI++++. Children do get MS well before their teens (my first MS hug happened in 1975, I was 9). If you pursue the question, it will probably come down to insurance company demands. Unfortunately.

  8. Sarah says:

    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.

    • Tamara Sellman says:

      Seems like researchers are convinced of the link as well. I had it at ages 16 and 19, myself. Wasn’t diagnosed until age 47.

      • Kb says:

        I was diagnosed with mono at 12 and again at 16,but do not have MS (I am 56 nkw). However, I was diagnosed with ILC breast cancer and have been readimg studies showing associations between EBV and cancer. Interestingly, I am an identical twin who has not been diagnosed with either (thank God). I think epigenetics is just as important!

        • Tamara Sellman says:

          Epigenetics is fascinating and makes so much sense to me. My daughter is studying it in college (minoring in medical anthropology). Sorry to hear about your cancer DX, wishing you well with your treatment and prognosis <3
          Tamara

  9. Sherri says:

    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.

    • Tamara Sellman says:

      Sherri, you bring up an important point: a LOT (I mean, A LOTTTTTTTTT) of people probably had mono as teenagers and didn’t get diagnosed, so those who say they didn’t have mono… well, maybe they did, maybe they didn’t. Doctors catch it now, but they didn’t catch it so much back when I was a teen (I had it in 1981, then again in 1984), and for sure my parents thought I was faking an illness… I almost didn’t go to see the doctor!

  10. Andrea Pisano says:

    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.

    • Tamara Sellman says:

      I have a couple of maternal-side cousins who also had MS, and also had mono (twice), so we are on a similar course. Thanks for sharing!
      Tamara

  11. Laurie Warner says:

    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.

  12. Linda says:

    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.

    • Tamara Sellman says:

      It’s crazy how common it is! Doesn’t appear to be a root cause all by itself, but put EBV into a perfect storm of other conditions (such as low vitamin D and maybe smoking or secondhand cigarette smoke), and you might find it’s more prevalent then.

  13. Joni Mercado says:

    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.

  14. Tracy says:

    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

  15. Tina S. says:

    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.

    • Tamara Sellman says:

      Wow, Laura, you are so not alone in this reality! So many comments even just here confirm this to be a reality. In solidarity,
      Tamara

  16. Danielle Conroy says:

    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.

  17. Celia kulrich says:

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

    • Tamara Sellman says:

      IKR??? I caution people to not fear they will develop MS if they had mono, because it does seem like there is so much more to developing MS than EBV and plenty of people who had mono do not go on to develop MS. Still, it’s spooky, the commonality of these stories even just here in the comments.
      Tamara

  18. Kimberly F. says:

    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.

    • Tamara Sellman says:

      Kimberly, you are a great mother to be so attentive to your daughter’s needs and for advocating for and with her. I hope she remains stable! I do think what you describe as a common combination of risk factors is pretty accurate… thank you for sharing your story as a caregiver (and thank your daughter for being okay with it!) because these are precisely the stories we need to help each other get through living with chronic illness. Best of luck to you both! <3
      Tamara

  19. Karen M. says:

    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.

    • Tamara Sellman says:

      And Boom, there you have it! Yay for the 60s and 70s, indeed! I appreciate your sense of humor. I think many of us with not so apparent symptoms can likely trace back onset far earlier than what tests can measure. Hindsight is helpful, even if we can’t use it to prevent our own disease, we can at least connect the dots. For me, that is useful and explains so much. Thanks for your comment!
      Tamara

  20. Jennifer Scruggs says:

    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:)

    • Tamara Sellman says:

      Welcome to the (not so fun) club, Jennifer. Interesting that you had VD deficiency dx ahead of your MS dx…
      Tamara

  21. Gina K says:

    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.

  22. Asia says:

    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.

    • Tamara Sellman says:

      That’s a good approach to your daughters’ own mono experiences. We don’t want to scare them, but being cautious and making healthy life choices are always a good default position to take.

  23. Joan B says:

    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.

    • Tamara Sellman says:

      Yes, the swollen glands were truly painful, I remember having an oversize spleen and swollen lymph nodes in my neck.

  24. Peggy says:

    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

  25. Jamie says:

    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.

    • Tamara Sellman says:

      Sorry to hear about the HS, that sounds like an extremely uncomfortable condition. You’re right, most people with one autoimmune condition usually have more than one (I also have RA, and had preeclampsia while pregnant, for instance). I hope you are asking a physician to check out your MS symptoms, too. Good luck!
      Tamara

  26. Mare says:

    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!

  27. Stacey says:

    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.

    • Tamara Sellman says:

      Hi Stacey, sorry to hear about your daughter’s DX. I worry about one of my own, as well.

      As for the medical community, they can only act safely on conclusive research, and while EBV may be a major factor, it’s not the only one. I don’t think they are hiding anything or ignoring the problem, it’s just far more complex than just mono or just vitamin D deficiency etc.

      A lot of people have mono in young adulthood and never develop MS, so that’s probably part of the predicament.

      I hope you are able to find good support and therapies for your daughter. She is not alone, and can go on to live a productive life with the help of organizations, family, friends, and her MS peers.

      Best wishes,
      Tamara

  28. Sandy Frauhiger says:

    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?

Leave a Comment

Your email address will not be published. Required fields are marked *

Pin It on Pinterest

Share This