Epstein-Barr Virus - A Cause of Multiple Sclerosis?

Yes, i had a bad case of mononucleosis, which almost killed me, when i was 3. My first signs of MS started up at around 18

Nope, never had mono, healthy as a horse until 1/18/09 MS dx at age 60

yes I had a mild case of mono back in the early 70’s.

Yes, I had this quite badly when I was 17 – I’m 63 now. My MS started in earnest after the birth of my 2nd child in Jan 1984 but looking back, I can identify strange episodes before that date.

Yes – I had a mild case of mono when I was 19 and was diagnosed with MS (Relapsing Remitting) when I was 32.

Yes, I had a bad case of mono in 1979; showed MS symptoms in 1983 and was diagnosed in 1997.

Yes, I have had mono twice. I had a bad case of it in the 2nd grade and then I has a mild case in the 8th grade. The MS hit when I was 19.

Yes! I had mono in my mid-twenties. Although I was just recently diagnosed (I’m 53), I remember having some ms-like symptoms a few years after the mono. Then nothing I remember for years.

Never had mono. Was diagnosed at age 29.

Yes, I had a severe case of mononucleosis when I was 16. I was out of school for about 3 months and had a tutor, which ruined my high GPA. After that I had a harder time focusing on my studies, including college. I am 62 now and after 13 yrs of “possible/probable MS,” I was last summer just given a clear diagnosis. My symptoms are many but not walking. Numbness/tingling in extremities (and pain), random extremely painful spasms. Frequent bladder infections and occasional incontience. Bowel problems. More. Yes, I have believed mono was the start of it all.

Yes, I had mono when I was 18. Came down just after my sister came for a visit. This is real odd. With in a day or two she came down with MS and I with mono. Now 30 yrs later I have been diagnosed with MS.

No. Never had mono!

Nope. Never had mono – but married a man who had it in college.. ? Diagnosed 3 months ago at age 33.

Had two severe cases of mono when I was late teens\early 20’s

No, never had Mono, diagnosed five years ago at 24.

Yes. I was 18 and in college in 1982.

Diagnosed with MS in February, 2003 at the age of 39.

No, never have had mono. Dx in 2008 at age of 46. I do have Hashimoto’s thyroidistis, another autoimmune condition

I had Mono at 11, started have the odd MS syptoms at 13, and was diagnosed with MS at 17.

All the time I had Mono, it felt particularily evil, and not just a virus. I would be awake for ten minutes than asleep for an hour, and a walk to the bathroom was exhausting.

If I had to guess, I’d say Mono is the culprit

Oh I forgot to say, there is a form of Mono called ” walking Mono” like walking Pneumonia, you can actually have Mono, and never know it with little or no symptoms.

no…never had mono….very healthy until diagnosed with ms at age 50.

Mono at 19 (bad case), diagnosed with MS at 31 (suspected having MS for at least 5 years at time of diagnosis).

Yes, I had mono when I was 16 and it took me about 5 weeks to fully recover. That was in 1987; I had my first symptoms of MS at 34 and was diagnosed shortly after.

Nope never had Mono. healthy as could be until 98 when had episode of numb feet. Then diagnosed Jan 09.

I had mono at 14. Symptoms Recurred frequently so I was then told I had epstein – Barr virus/Chronic Fatigue Syndrome which relapsed on and off for about ten years. no problems after that. I was diagnosed with MS dec.’08 at age 42 due to a bout with optic neuritis. Had the exact same thing happen with my left eye nine years ago when I got pregnant! ( no medical explanation was found then) I suspect actual onset of MS was at age 33.

Yes! I had it when I was 21. I was very sick for a week, during which I ran a high fever. Two years later (23) I began to exp. heaviness in my legs and developed a numb patch on my thigh, and over the years exp. minor neurological symptoms – i.e., Bell’s Palsey. At 33, woke up unable to see out of 1/2 my right eye and was sent for test, from which they concluded I did not have MS. Five years later, my right leg went numb, followed by my right leg and I was finally diagnosed in 1989.

BTW, Julie – thank you for this. I’ve always wondered about the prevelance of a history of glandular fever among the general MS populstion and this certainly confirms my suspicion. I was healthy as horse (had an exciiting career with the CIA) taking ballet and tennis lessons when I got sick. I’ve no doubt in my mind that that’s when it began.

Yup. Had mono when I was 26. I was hospitalized for 5 days because of it and missed a month of work – it really wiped me out physically. My first MS symptoms date to when I was 36, and I was diagnosed when I was 39. FWIW, my brother had mono when he was a teenager but no MS. No other MS in my family.

Had bad case of mono at age 24. Spent a week in the hospital, couple months of recovery & 1-2 years to fully feel normal again. Diagnosed with MS in 2000 when I was 40. Looking back, the mono & MS symptoms (fatigue, heavy legs etc) are very similar. Have several Irish relatives with MS.

Yes for me. Bad case of mono in college (’82). Diagnosed with MS in 2004.

Yes – Had mono at 20 AND strep at same time. I’m in a project at Hopkins called Accelerated Cure Project and that’s one of the questions.

Yes, I had Mono when I was 5 and pneumonia that was in 1962. I was given a dx in 2002 but was told I had it for at least 10 years prior. They thought it was benign. I now can not walk without a walker. I also think it had something to do with my getting MS.

I had severe mono when I was 16. I am just shy of 43 now and have tested positive for mono 3 times – I have had numerous lymph node infections and was sick all the time-discovered I have severe allergies (I have been on shots now for about 3 years) and I have EBV. For the past year or so, I have had terrible migraines, muscle spasms and twitches along with shooting pains, and strange brain fogs where I forget things and can’t focus. I never had any of this before and no one seems to be able to figure out what is wrong. Sometimes I feel like I am going crazy.

I had mono, strep throat, and tonsilitis at he same time at age 14, 1976; missed the last three weeks od ninth grade.

I had my first sympton in 1985, went numb from mid-chest on down to my feet; started seeing chiropracters for the next 20 years believing it was from a bad back and I maintained numbness in my legs and feet. In 1997 my fingers started going numb. Nerve conduction tests and finally a spinal tap made the MS official.

“It’s only pain” That’s my current mantra as well as “PMA, not PMS”

Yes! I had a horrible case of it in high school.

I don’t have MS but I do have fibromyalgia – another condition marked by gray matter loss and low brain volume.

WOW, I cannot believe all the comments and how many people have said yes. I had glandular fever at 16, and I am just diagnosed with RR MS recently (aged 28).

YES, when I was 16 in 1979. severe case of mono along with strep throat. Wasn’t until 1988 that I had my 1st wierd post influenza episode where doctor/neurologist in colorado mis-diagnosed and tried to put me on anti-seizure medicine. Now 20 years later diagnosed with “slam-dunk” relapsing/remitting MS after another post influenza episode. My heart and gut tells me this is very related to a virus.

I have scondary progressive MS. In 1970 I had mono for the whole summer. This was before my MS diagnosis in 1985. Two of my three sons have had Epstein Barr virus and I worry anout them getting mS constantly

Never had mono. In 1995 was having extreme fatigue and other symptoms. In 1995 an EBV test showed extremely high results. Told it was Fibromyalgia/Chronic fatigue syndrome. Was diagnosed with Relapsing/Remitting MS in 1999.

Yes. Had a bad case in my late twenties. Missed work. Looking back had some symptoms before being diagnosed.

I got mono really bad after crabbing at the Jersey Shore back in the early 80s. I had really swollen lymph glands and terrible cramping of the abdominal muscles so bad doc wondered if I had Hodgkins. Shortly after I used to wake up with my left arm completely numb and muscle cramps of the right leg. Mom said it was from sleeping in bad positions. 20 years later, I got pneumonia and developed Lhermitte’s sign. Cervical and thoracic spinal lesions and possible demyelination of the corpus callosum showed up on MRI 20 yrs later. I’ve been diagnosed with CIS already. Just waiting for the official word on MS.

yes,had a bad case of mono at age 15. Ou of school for 3 weeks. Took months to recover. Tonsillitis and tonsillectomy at age 18. Have always been characterized by bouts of fatigue. Diagnosed with ms at aged 43 though had MRI lesions and other symptoms for years . Alot of research in this araa – I think someone at duke university is studying this .

I already said Yes. Now I’m wondering how many people had severe leg cramps when they were growinig up like I did. My mother said they were growing pains. They were SO painful and frequent. Now I wonder if they were MS. Did any of you have severe & frequent leg cramps growing up?

How many of you have had multiple sprained ankles? I had about 20 growing up. Now I wonder if they were MS related.

Yes, I had a horrible case of mono in my early 20’s (1989) and ended up in the hospital. I had symptoms for a year. I was diagnosed in 2007 when I was 40.

no never had it

Yes I had very bad mono at age 16. Two different episodes. I was out of school for weeks. I had first MS symptom (numb feet) at age 27 followed by optic neuritis at age 29.

Wow, I am deffinetly thinking this is the link. My story is the same as the majority. I am very thankful for the power of my mind.

I had mono when I was a senior in high school. I missed 2 weeks of school. I wasn’t diagnosed with MS until I was 53.

Yes, I also had a pretty significant case of mono at the age of 17. Knocked off my feet, which were busy keeping high school, a 30 hr a week part time job, and a nice social life going, for three weeks. MS at age 51, and right up the scale to PPMS and wheelchair in three years.

I had mono when I was 22. I was just diagnosed this past year with mono at age 39. No noticeable symptoms in between though.

Yes, I too has a seriuos case of mono in college (missed a semester) BUT it is my understanding that if you test the general population a very high percent has the antibody – - – many who never knew they had it.

YES, I had mono when I was in 7th grade and was just diagnosed Oct ‘08 at age of 31.

What a coincidence, huh? I believe I was 16 when I had mono. Was out of school for a few weeks. DX in 2001.

had sever case of mono when I was 6, diagnosed with MS at 45

Yes, I tested positive for the EBV, but never experience mono that Im aware of. Diagnosed with MS 2008.

Yes, I got mono first year in college when I was 18. I also hospitalized for a week when I was 13 with a severve viral infection not sure what it was but I had been in bed for a couple of weeks.

Yes, I had EBVirus in 1989; horribly sick. After 6 months I got better. My first MS symptom was a year later, but I didn’t know what it was, and neither did the dr’s. I was in the hospital for 5 days with torso numbness. Final Dx 2 years ago when symptoms presented again, and increased.

Never had mono. Diagnosed with MS at age 41. My oldest son had mono during high school. I worry that he’ll get MS.

Yes I had it when I was 18 years old,March of 2007 when I was told I had ms. I’m 55 years old, male

I had mono when I was 15. It caused me to miss a month of school. I was diagosed with MS at 48, although I look back and see I first had mild symptoms 8 years prior to that.

Yes, I had mono when I was 16 and then again when I was 21. Had my first attack when I was 32 – was never diagnosed. Had my acute attack at 41 and then I was diagnosed and it’s now 3 years later.

yes- diagnosed with Epstein-Barr virus in 1991, then MS in 2005

Linda, about your “leg cramp” question…

I experienced something in my legs when I was young (from age 8 on, I’d say) that I’ve often wondered about. It wasn’t “cramps,” but it was a strange sensation in my legs that only happened at night when I would be trying to go to sleep with a light sheet over me (I’m from the hot South!). I would have to move my legs or kick the sheet off of me because the sheet felt “heavy” on my legs, so heavy it would “hurt” or I’d just feel “icky” about the sensation and had to move. Of all the “minor” details of my youth I could recall, it’s always been odd to me that this memory is so vivid. I think it’s because it almost had a “mystery” quality to it…it made me feel “weird” (kind of afraid) so I remember it.

The episode of glaudular fever, though, is the defining event, in my mind. Mono is a very common virus, and it seems to make sense that MS is appearing only in the individuals who have some other pre-disposing condition(s)…which points to the complexity of the research required. Perhaps these strange sensations on the surface of my skin were indicative of just such a pre-disposition to the additional immune system damage cause by the virus.

I’ve learned so much from everyone’s comments…thank you for sharing (don’t you just wish we could all get in a room together and ask each other questions about our experience with it till we’re blue in the face!)

I didn’t understand the part about the virus still being “active” in the system post event. I’d love to know more about that, and if anyone is treated regularly (with some kind of antibiotic). Maybe that’s why monocycline was so effective?

Never had mono,a bad case of measles@ 15 then Glandular Fever @ 20 suffered from ‘pins and needles’ all through college (diagnosed as nerves)!Optic Neuritis @ 27. Had my only child @ 28! Bells palsy at 32. Optic Neuritis again @33 lost the sight of left eye and was diagnosed in 1980 age 33 with MS.A long story,I worked full time until 2005 had a major relapse and one again in 2006, had to work part time. I am retiring next week age 62. funnily enough I was told in 2006 that the hospital thought I had MS in 1970 when I had Optic Neuritis. Links in with other sufferers doesn’t it?

NO. Never had mono, & was perfectly healthy till got heppatitis B vaccination in 2004

Yes, I had mono in 1983 and again in 1984 when I was in high school. I was diagnosed with MS in 2004.

No. I can’t say that I ever had mono, however, like Linda I had leg cramps all the time growing up. I could never bring myself to believe they were just growing pains.

No, I never had mono. I was diagnosed with MS in my mid 20’s and have had slow progression since then. Now 48 years old.

Never had mono – finally diagnosed with MS at 46 which was 7 years ago (tho I had many symptoms over the years that I now know was MS) but in response to Linda and severe leg cramps. Yes I had those for years until I was advised to take 400 mg. of magnesium daily – which caused them to disappear completely.

Had mono/strep as a teenager (1982). 1st MS symptoms 15 years later, diagnosed in 2004. Now SPMS.

I had a mono in high school; missed a month of school. There were no obvious lingering side effects.

I had mono when I was in 7th grade. Then in my early 20’s had chronic fatigue, now at 47 have been diagnosed with MS about a year ago. I always wondered if there was a link, and hope that research and the cure is on the way.

I was told on one of my regular physical exam that i was tested positive for Epstein-barr this was many many years before i was diagnosed with ms. Forgot what exactly i was told but i know they told me something like – not to worry about it because it is something that will always show up even if I am not experiencing any symptoms.

I had a severe case of Mono when I was 16 along with strepp and tonsilitis and had to get my tonsils removed with alot of infection in my body. I was mis-diagnosed back in 2002 when I first started having the MS symptoms. Then in 2007, things got worse and a Dr decided to do a MRI and spinal tap and found all of the lesions on the brain and spine. Things have gotten worse today,getting ready to have to stop working and go on disability. A 33yr old mom:)

At age 20, I had severe mono and strep and missed a whole term of college. A few years later, came down with a “mystery” throat infection that laid me up for weeks: cultures were sent to the CDC but they couldn’t determine whether the infection was viral or bacterial. A tonsillectomy finally took care of things, but I have wondered now and again about that unknown pathogen.

At age 60, I was diagnosed with MS and often think the fatigue is “mono-like.”

This is a very interesting forum!

YES. I had a BAD case of mono when I was 16 years old. At first my parents thought I was just being lazy ut after being tested it was found to be mono. I was real sick for 4 months!!
Dianne

YES I had a horrible cas of MONO around age 9 which was also aggrivated by an allergic reaction to Pennicillin. I have had various M.S symptoms though my childhood looking back but was not officially diagnosed until 1997 at age 23.

I had a very bad case of Mono when I was twenty five. After recovering I never thought I had the energy level I had before the infection.

Yes had mono and my sister who also has MS also had bad case of mono… definitely interesting.

I don’t have MS (yet). I say “yet” because I’ve only had one ‘MS indicative episode’ in 2005 (double vision) and I also have brain lesions (seen on MRIs). I consider myself on hold until I get another symptom. However, I did have a case of mono so severe as a teenager that I was hospitalized for a week!

Yes, I had a bad case of mono @ age 17. I ran fever for six months, and my stamina was never the same. Was dx with MS @ age 40 in 2007.

I had Mono when I was 19. I was only diagnosed with MS until I was 56

Yes. I was hospitalized with mono in Aug. 1982 when I was 14. Then, one morning the following Dec. I woke up and could not use my joints to sit up or stand. Drs. first said maybe arthritis then said it was “exhaustion” from the mono. Had odd episodes off and on… always needed my fair share of sleep. Then last year at 41 I started having more MS symptoms like my sister. After a brain MRI, I am in the Probable category- as far as I’m concerned I have MS.

I was diagnosed with a pretty severe case of EBV at age 20. Ive not seemed to fully recover till this day (39), and signs of MS started showing at least 9 years ago and getting worse, although some doctors still don’t say it is MS. “Early MS”, but still no treatments.
I’ve learned now why exactly suicide is the #1 cause of death in MS patients.

I too had mono at 18. Missed a full month of work. Can look back at my health since then and see major symptoms of MS since age of 19, but wasn’t dx’d until age 32. I also had the leg cramps that were so bad growing up and I thought they were more than growing pains.

I had a severe case of mono when I was 17 that kept me in bed for 6 weeks. Three months after healing from that, I went to Europe on a school trip and had a bad relapse lasting three weeks. Two and a half years later, I had another bout with mono and had to take a break from my sophomore year in college. That third time was the FIRST time any doctor tested me for EBV, which was positive.

Continued (cognitive problems)…I was diagnosed with RRMS when I was 28 years old but I had symptoms long before that.

My junior year of high school I had was
diagnosed with Mono, Strep throadt, tonsilitis, and a sinus infection. I spent a full month in the hospital and was out of school for a full 2 months and only went back because my grades were failing. My doctor had recommended another month of home/bed rest but I was going stir crazy and wanted to be in the school musical, which I had gotten a lead role in!

I had a bad case of mono in college @ age 19. Always said “I wouldn’t wish that fatigue on my worst enemy” Took all of the little white pills given in the infirmiry. At age 45 was experiencing some fatigue and was tested for mono, (mild recurrence), nerve conduction, and loads of blood tests. I said I was having trouble walking. “It is stress”, I was told. “limped” along until age 55 when I dumped all the “old” docs and found a new one and got diagnosis of MS at age 56. The lassitude I experience w/ MS is exactly like the fatigue of “mono”. I bet there is a connection!!

Nope…never had it!

Yes. I had severe case of mono 1973, diagnosed with MS 1978.

I had two severe cases of mono in high school (the 60’s). My sophomore year I received home visits from a teacher. When my MS
symptoms started, tests did show the EBV virus. I was diagnosed with MS in 1996 after 3 years of tests. I have been in remission now for 13 years (I’m on Avonex).

No I have never had mono either, although the thought is interesting. I think there are so many interesting overwhelming thoughts and ideas and approaches to this disease, it makes it hard sometimes to know which direction to go.

Yes, I had it at 14…. MS Dx at 35….

I did not have EBS or mono. Diagnosed with MS at the age of 39 with lapsing/remitting MS.

I had mono when I was 30 and toward the end of that illness developed the symptoms that eventually were taken seriously by docs when I was 48 – that’s when I was diagnosed with MS.

No, I have never had mono. I was dx’d in 1988 at age 28.

I did not have EBS or mono but I was hospitalized for 1 mo with a severe case of Acute Hep A when I was 14 yrs old. I spent another 3 mos at home recovering and had to have a tutor for school. I have never felt well since then, especially dealing with fatigue. I have always suspected the MS began with the Hep A illness. Looking back, I can now identify MS symptoms that began soon after recovering from the Hep A. I was finally diagnosed with MS almost 3 yrs ago at age 54.

yes I had mono and my problems began about 9-10 yrs. ago.

YES! I had mono at age 15. Diagnosed with MS at 30.

I had double pneumonia and measles at the same time when I was 3. I had mono when I was 13. When I was 26, I felt very tired all the time and the doc said it was “chronic mono” as the EB showed in test. I got a positive dx about a month ago (I’m 47 now). I was fairly sure I had it over a year ago, but know for sure now.

I had a severe case of mono/epstein barr in my early 20’s that took me a year to recover from.
I have had two episodes of MS type symptoms since then that each took a few years to go into remission.
I am currently disabled from this disease.
Since I have all the signs &symptoms of MS but no lesions they are treating me for EB of the brain with lamactil. We are still in the testing stages.

Diagnosed at 32, No, not that I am aware of, but I did kiss an ex-girlfriend of mine in college, who had it. Who knows, I might have had it and never knew.

I had epstein barr in my early twenties that took me a year to recover from, but it affected my heart’s neuro system.
My next attack was started with viral spinal menigitis and lasted five years. At that time I was diagnosed with MS without lesions.
My current condition has me on disability. Because of my history they are treating me for a viral infection of the brain with lamactil. It’s early im the testing stage.

I had a mild case of it when I was 13. I’m 52 now. I was symptomatic with possible MS at age 32…diagnosed at 39. But I can remember certain instances while in my 20’s (like having to leave the dance floor to rest because my legs were so tired). So I’ve come to my own conclusion based on circumstances, that I probably had it then.

Yes, I had mono at 12, a very bad case, even lost my voice for a month and was down in bed for 7 weeks. I never felt quite the same after that. Although always an athlete until a horrible car wreck in ‘99 at age 30, I tired so much quicker and easier after having mono to the point that I went from running track, playing basketball and volleyball to only being able to handle golf in grade 10.

Never had mono but had herpes stomatitis when I was 8. I read there may be a link to herpes and MS but not sure.

I had bacterial spinal menigitis when I was 4 months old. I was diagnosed with MS when I was 29. I always sort of wondered if my immune system went a little crazy with the meningitis, and never fully reset itself. That’s one of the reasons I’m really interested in stem cell treatment, as a way to “reboot” the immune system.

Yes, I had mono-nuclear hepatits at the age of 18 for three months. It reoccured three months later and I missed a year of college.

I had mono in junior high and was very sick. My first MS episode was 26 years later.

Yes, I had Chronic Fatigue in ‘90. Also, had 10 surgeries before the age of 5 (another article mentioned this looking for possible causes of MS.) Haven’t been “officially” diagnosed yet (not insured nor financially able to be) but my July MRI and symptomatic “episode(s)” after many visits to the dentist and lidocaine exposure all point to it.

No Never had mono but I had chicken pox Twice. One as a child and again at age 26. Diagnosed with MS in at age 52.

Reading these brief blurbs, I felt like I was stumbling upon my own old memories, over and over again. “YES! That’s exactly what happened to me” or “gee, I only missed a week of work; I got off easy!’ I kept a kind of mental count, as I read, of the years between the EPV event and the MS diagnosis – avg. 15 years – depending on the alertness of a doctor. Like many of you, after the diagnosis, I could go back in time and pinpoint earlier telltale signs of MS that no one would have recognized (and I was too strong and healthy to be sick,I thought). The damage is so subtle at first, we don’t even notice it. It takes years for the deficits to accumulate. I had one doctor tell me (my favorite) that the heaviness in my legs was caused by the bones in my legs being “too close to the surface of my skin.” (Bless his heart; he tried.) Some get the news earlier, some later…and to those of you who suspect you have MS, or are anticipating a diagnosis soon – I hope someone’s offered to put you on a therapy now! Please don’t wait.

I just wanted to give you all a big group “hug” and tell you how reading your story felt so familiar – like reading about myself – in someone else’s words. We are all tied together in a very weird (but kinda special!) experiential way. We’ve all “been there…done that!”

M.P. – I sincerely wish you luck in finding a doctor who will take your complaints seriously. Good luck.

Rosita – my heart goes out to you young Moms with MS. Hang in there!

No not that I know of. Was 36 when I had my attack and found out I had MS.

Yes–severe case of mono early 20’s. Every muscle was weighted in lead–all I could do was sleep. MS diagnosis, 2004, age 51. Looking back there were many symptoms consistent with MS before diagnosis. Also diagnosis of sun allergy (measle-like rash)around age 13. Told I would out-grow it, but never did.

I did have the EBV back in 2001. I believe I had it at least 6 months before that. I still have not been diagnosed with MS but I know something is not right with me. My symptoms are unfortunately classic to MS. I’m just wondering why it takes so long for a diagnosis.

Thank you,
Kristian J.

yes I had mono twice as a young child

Thank you Pen, for your concern. I’ve been going through complete hell. The fatigue, falling, eye trouble. Severe eye pain. Million more MS symptoms, lesions, and doctors are still reluctant to say its MS for sure. All else has been ruled out. MS or not, I’ve had severe EBV. All I want is some form of treatment so this doesnt progress, which every year I’m getting worse. I’ve seen a neuro that said I look like i have grass seed of the brain, another told me MS treatments are too expensive. For GODS SAKE, ALL I WANT IS HELP!!!!!!!!!!!!!!!!
6 kids and 4 are small. All I want is to have a normal life with them.

I had a bad case of mono in third grade. I honestly don’t remember anything about it except being out of school for two weeks, but exhausted longer. Then, in 2006, my daughter contracted mono in third grade. Six months later, began having MS like symptoms. Received MS diagnosis Dec. 2007. However, had many incidences where I had symptoms long before this time.

I have heard of it , and actually had it when I was about 10. The infection itself was no different than a severe COLD, but with some lymph nodes swell behind my ear, and about 15 days with no medication, just liquid, the infection was gone. I was in medical school 2nd year when I had the diagnosis of MS, with optic neuritis. I have been reading about MS, as EBV is a very naughty little bug, all messing up with immune system. So I feel EBV, combined with other self traits, can be one of the many causes in one persons immune system to attack itself.

i had a severe case of mono when i was 14 years old and was diagnosed with m.s. at age 29.

yes I had mono when I was 16 and my first exacerbation when I was 28. Also you could do a mini survey of the herpes virus. I also got my first one when I was 27.

I have never had mono, I was diagnosed Sept. 08

Never had mono

Yup,had mono. @ 18

Yes, I had mono at age 18. My first sympton of MS was optic neuritis in my mid 20’s. Just diagnosed in June of 2008.

Yes, I had mono when I was 15 years old. I was out of school for three weeks and had to go to summer school that summer. I was diagnosed with MS in 2004 at the age of 27. I never thought that mono caused my MS. I also have hydrocephalus and a lot of my symptoms from Hydrocephalus are the same as MS. Headaches, fatigue, incontinence. Which makes it difficult to diagnose a shunt failure.

Yes!!! Had a horrendous case of mono Jr. year of college requiring hospitalization. Then relapsed forcing me to drop out. MS came 20 years later. I have always felt deep down that there was a Mono-MS connection, but my neuro brushed it off as anecdotal. Incidentally, about 80% in my support group have had mono.

Kristian – (116) I understand your frustration,I read an article in a MS magazine it must be 20 – 25 years ago and it always stuck with me! a guy wrote in saying that he felt quite bitter, he thought that the medics were basically very embarrassed because they didn’t know what caused MS and there was no cure for it and that was why they didn’t like to tell us.
I feel that if they actually shared the info with us earlier it may just stop us worrying why we were feeling so bad. When I was diagnosed albeit10 years later it was actually a relief! there again I didn’t know anything about it then!
I find the best medicine is ‘laughter’keep going and with fatigue, change gear and work or play through it, believe me it works.

Had a severe case of mono at age 16. Almost didn’t get credit for junior year due to poor attendance. I am now 62. Was diagnosed at age 43 – had a minor flare up 14 years later and am now in the midst of a more serious attack from which I am not emerging – at least not quickly. I am grateful for my previous 20 years of a normal life with the disease. And of course am now concerned about the next 20.

Yes, I had mono at the age of 20 – and MS at the age of 50!

Yes, I had a bad case of mono when I was 17. I was diagnosed with MS almost 18 years ago (am now 49).

Thank You so much Pen. I feel the exact same way. It is amazing to me how tired I am since I relapsed last Monday night. I just cannot get my strength back. My 9yr old daughter waits on me and worries about me. I feel like we are all so close too, in a weird kind of way. I will be praying for all of us MS patients. Should I ask my Neurologists to test me for the EBV or Mono?

No, never had EBV. Could have been subjected to it as I worked in a medical laboratory from age 17. First MS simptoms at 30 years.

I had mono in high school and diagnosed with MS at 36.

Yes, I had severe “mono” my junior year in high school. I missed an entire semester. I was also born and raised in Iowa.

Mary (130) – Within your words “I am grateful for my previous 20 years of a normal life” is an important lesson for the newly diagnosed and those still in the early years of the MS journey.

MS is one of the diagnoses that isn’t a death sentence. As my first neuro suggested, “No, MS won’t kill you… but there’ll be days when you’ll wish you were dead” …badda-bing badda-boom…hilarious…(not!).

I wish he had, instead, said something like – “I just gave you some very bad news, but now you have a choice to make. You can dissolve into a heap of self-pity (and who could blame you?) or you can seize the 15-20 or so years this bad boy generously gives you before it get’s serious about messing up your plans, to fortify yourself against the ravages on your physical body that WILL eventually arrive. It’s up to you. You can spend the years wisely or you can fritter them away. You’re standing at the threshold of the best years of the rest of your life. What are you going to do with them? It’s your call.”

I had EBV in 1971 (age 21) optical neuritis in 1983 (age 33) and full onset in 1989 (age 39). My MS is the slow progressive type – no severe episodes, just chronic deterioration (though it may have been RR up until 1989). I walk with a cane short distances and use a walker/WC for longer ones. I worked full time (gradually downgrading to less physically demanding jobs – I was a litigation paralegal) for another ten years (2000) before I accepted the reality of my limitations at age 50. I’ve continued to work on a temp basis (as a recept for vacation relief, etc. at a wonderful law office who kindly accepted me gimp and all)since 2000, and have only now (age 58) progressed to the point where working outside the home in a mainstream environment is truly problematic. All, in all, I’ve had a good 20 years since the diagnosis (almost 40 from that seminal event).

I’m no quitter, and came out of the gate fighting. My independent spirit and extreme aversion to all manner of unpleasantness (lol!) has served me well in dealing with the disappointments and challenges of MS, but I wish the “20 year plan” concept had “dawned” on me 20 years ago.

Instead of being forcefully proactive with all the time I had to prepare for today, I wasted too much of it being buffeted around with all the fear and uncertainty of the “unknowns.” I actually now regret all the time I wasted “whistling in the dark” about what was happening to me. And while all my “denial” helped me over some high hurdles, looking back, I can see now that I wasn’t doing myself any great favor by being such a stubborn Pollyanna.

Some acknowledgement about how important it was to use the time to get physically strong –NOW – MAXIMUM strength – NOW – and healthy – MAXIMUM health – NOW – and how important it was to sustain it all – at maximum levels – NOW and FOREVER – as a way of life – EVERYDAY – would have been a more realistic attitude, and would have made for less guilt and self-recrimination today – which tends to “poison” some moments of my existence now (like being irritated that the slower I go, the faster time seems to fly…and why on earth must I drop EVERYTHING I pick up these days! Get one of those little balls and squeeze it every chance you get.)

As the long nerve pathways to the muscles are damaged, the window of opportunity to get those muscles in the kind of optimal shape they will need to be in to continue to support you through normal everyday life closes forever (or until the miracle of regeneration becomes a reality – we can hope!).

I think I’d feel less anxious about “tomorrow” today if I’d been smarter “yesterday.” I’ve been in intensive PT now for 4 months (after 2 back surgeries) and am doing really great, but I wonder how much further along that continuum of well-being I could be if I’d started the emphasis I now have on PT and an all-natural food (no prepackaged or canned, or bread or dairy or red meat) 20 years ago.

There’s a lot of “regret” in my unknowns now. The science is moving fast, and maybe they’ll be a chance for all of you to never reach where I am now. I hope so. But – just in case – make a twenty year plan NOW!

(Ya’ll are probably worn out just getting to the end of my comments, and saying to yourselves… “boy, that girl’s got a mouth on her!” Sorry….40 years of experience with MS leaves you with A LOT to say!)

Rosita – I think you should definitely see a doctor; the onset of any dramatic increase in fatigue (or other symptom) should be evaluated as soon as possible. I hope you have some kind of support network that can help you. (It’s easy for me to dispense advice because I have no minor dependents who require my time and attention – even my beloved Westie died in 2000 and I’ve resisted the temptation to get another companion pet precisely because it takes every last ounce of energy I have just to take care of me!)

M.P. – I hear your pain; you are frustrated. The brain is such complex organ – and the number of completely separate pathologies (what’s going wrong inside our body) that can result in identical outward symptoms is – frankly – overwhelming. I’ve read so many descriptions of other neurological diseases over these twenty years and wondered if I had THAT one rather than MS, many times. It’s the preponderance of symptoms – perhaps as they occur and accumulate over time – that will eventually point to one, and the appropriate treatment. I hope you have the access to the many, many doctors it may take to find the one that will find an answer and the appropriate treatment for you. You must keep pursuing that goal relentlessly (Job #1). If you have access to a doctor who specializes in infectious diseases, that would also be a good source of knowledge to tap. Some mental health support while you’re undergoing all this frustration would also be a great idea.

I had a severe case of mono in 1976, when I was 16. I had to take prednisone just to stay in school.

I was not diagnosed with RRMS until years later, but it seems to me that I continued to have some problems that may be attributed to an earlier case of MS. I am not responding to any of the beta-interferon drugs.

Yes. Had severe case of mono when I was 16 and then again when I was 24 over in England. Back in states MS symtoms started when I was 32, 2002. MS diagnosed Jan. 2009

At age of 20, I had been dx with Epstein Barr, really sick for a couple weeks, 20 years later, July 2007, I was dx with MS….

Never had mono. Diagnoised 8-8-08 with MS at 49+1/2. Was on birth control pills for 30 years. 6 months after stopping the pills I had my first MS attack. Had MS diagnoisis after 2 MRI’s that were 30 days apart.

I had mono at 29 which is bad time for higher rsks, I was a sickly child with bladder problems,same measles twice,double pneumonia age 5. Bladder prob as child but carried into adult, had leg issues shin splints tripping alot. many risks from numerous studies.Age 18 hit head on by drunk driver losing almost full term baby girl,had splenectomy and trauma.miscarriage,many complications like pneumonia again, phlebitis,After success of having a son, had a baby girl die later 1+1/2 day old. Hormones off, history of double vision, ON and quirky vision. Brance retinal vein occlusion, epiretinal membrane. Long Hysterect with so much scar tissue to remove they had to leave in my append. More but getting off mono topic

Bernice tennant

I have never had Mono but I was exposed when I was much younger to a friend that had it when we were in school. I was diagnosed with MS in 1995. I am now somewhat more concerned for my son though. He had Mono about 4 years ago while in high school. I wonder, does his genetic link to my MS plus his Mono make it more likely that he will be diagnosed with MS down the road?

I had mono at age 14, then diagnosed with MS at 27. I also had the severe leg cramp thing when I was growing up also.

I had a very bad case of mono when I was 14, missed 5 weeks of school. I was diagnosed at age 27, all of these post amaze me, I am worried about a young friend that just got over it but I will not say anything to her.

i also had th ebv show up in my blood work. resently dx with ms. starting my med avonex tuesday evening. i am not real happy about it as i just don’t like taking medication but i fear if i don’t do something my condition may deteriorate. i resently went to a doctor and he mentioned to me about a therapy called low dose naltrexone, its taken orally. has anyone ever heard of it or tried it? please respond or could the doctor resond. thanks

Yes, I had a bad case of mono when I was 19. I kept going to the doc but he just said I had a sore throat and nothing helped me. Finally while in his office my mother looked at me and said “You are yellow” She realized in the “good light” at the doc’s office that I was jaundiced. It was only then that this doc decided perhaps that maybe I had mono. I had gotten hepatitis as a result of the mono. The mono was bad enough that I had to be hospitalized.

I am now 50 and was diagnosed with Relapse-remitting MS 5 years ago although I can relate symptoms prior to my diagnose. It was only due to an exacerbation, after a series of tests that I was diagnosed officially.

I don’t know exactly when I had it, but my blood-work shows that I’ve had Mono. I was sick a lot as a child. I was taken out of P.E. because of fatigue. Was in Germany in 1955 where I was sick with Scarlet Fever.

I was diagnosed in 2005 with MS, but had the symptoms for years. I have major fatigue with pain in my middle back and legs – and the MS hug. Also, numbness in feet – sometimes feels like I’m walking on stones, other times feels like walking through water.

I think a lot of people have had Mono and just thought they had the flu.

Nope. Never been dxd with either. Even gave platelets to an ill friend and that wasn’t a concern.

Yes, I was exposed when I was 17. It presented itself in my boyfriend at the time. I ahd strep so much that they thought Mono exposure could have played a part in it.

Nope, never had mono. Very healthy till dx March 2008. Still feel pretty lucky and healthy considering what others deal with this disease.

Yep, had mono at 17, diagnosed with MS at 27, had another severe episode of mono in my early 30’s. Am now 48 and the MS has been bad the past four years. I’m seeking care at a chiropractic neurologist as the meds seem to be making me sicker…
Deb

Hello all. I need your thoughts. I have had problems for years – have autoimmune thyroiditis diagnosed in 2001. In August 2007, I got very ill, my lymph nodes had been swollen since October. My Ebv test was very elevated. As a result, I underwent a biopsy and it was clear for lymphoma or malignancy. Now I wake with insomnia around 1 -3 am. I have aching legs and when I wake in the morning my legs are stiff until I am up for awhile. It looks like I have some muscle wasting in my lower legs and I have lost some weight (from 140 to 131). I also have stomach pain and nausea and my right eye is not only getting blurry vision what I see seems slightly darker than in my left eye. I have frequent constipation but never diarrhea. I have frequent fatigue and some days it is extreme where I feel like it is all I can do to get a deep breath or to walk around – I also can get lightheaded.

Not long ago, I had a blood workup but did not show elevation of white blood cells or anything out of the usual.

Thoughts please?

P.S. I caught mono AND genital herpes in 1989.

YES, I had mono at the age of 18 years, when I was just finished high school in Edmonton, Alberta, CANADA. Then, when I was 21 years old, I had my first symptom of MS – Optic Neuritis. I really think there is a high, positive correlation between these two factors.

I have lived with the ups and downs of MS for close to 24 years, and thanks to acupuncture treatments for 17 years, my health is more or less stable now.

Good luck with your health, Nina

My daughter had mono when she was 17, that was in 1989, she missed a few weeks of school and then seemed okay. Diagnoised summer of 2008, age 36, though she was having a stroke, till results of MRI and Spinal Tap came back. Her Dr started her on Tysabri, so far she has not had another flareup.

No mono.

Yes, I had mono when I was 14. I lost feeling on the right side of my head. This is the first recollection of feeling loss. I am 58 years old now. I feel that the episode when I was 14 was my first attack. I look back now and I’ve experienced a lot of things I ignored. I was officially diagnosed when I was 42. The technology was not available when I was younger. I am kind of glad I did not know when I was younger. Ignorance was bliss for me.

Yes, I had mono at 15 and also got MS at 15. I also had a puppy, I believe could of had the distemper virus.

I had a bad case of mono when I was 16. I was diagnosed with MS when I was 23.

I got really sick once and they did blood tests that showed I had had mono at some point… was diagnosed with ms at the age of 15 last june.

I have Fibromyalgia, have Optic Neuritis for the second time, EBV, a zillion neurological issues, but no definitive diagnosis. So frustrating! i need help badly!

YES. Had mono in the fall of 1990 when I was a sophomore in high school (age 15). Dx with MS in Aug. 2008 at age 32 but began symptoms in 2002 (age 27) with ON.

I’ve never had mono that I know of, but was tested for EBV when MS symptoms showed up. EBV test was positive for high levels of antibodies and diagnosed with MS in 2003. Think that I probably had EBV around age 10 or 12 (1988-1989) becuase I was very sick for almost 3 weeks. My doctor never took blood, but never found out why I was so sick. Just said I had a virus that needed to run its course.

to JAM: I have been diagnosed with Fibromyalgia, even though I have white spots show up on my MRI as “unspecific”, I am in constant pain, never had mono that I know of though I think I was exposed to it. I have an aunt on each side of my family who has MS. I have restless legs, periperal neuropathy and NO diagnosis. I did, just today, find a specialist in Fibromyalgia whom I hope can shed more light on my case.

I had mono at age 12, relatively mild, didn’t miss a lot of school. First definitive MS symptoms at age 24 (numbness in legs and feet for several weeks). Diagnosed at 35 after Optic Neuritis.

Yes, I had EBV, or ‘glandular fever’ as it is called in Australia, when I was 17 and diagnosed with MS at age 32, though it started around age 29. I understand some people can have EBV without knowing or being diagnosed as well.

I too had mono prior to my “first” MS episode. I remember being really ill in January of 2007 and then I had my first episode in April of 2007. I did not know though that my illness was mono until they ran a blood test looking for it. Apparently what I had in January of 2007 was indeed mono.

Yes, I had mono in 1988 in high school. I was diagnosed with MS this week.

my mother had mono like symptoms in the 1940s then was dx w ms in 1975 then died at 47 in 1979. I had mono at 40 and now at 44 i am developing ms like symptoms…too early to know for sure….

I had both Mono & Strep throat at 15years old – allergic reaction to Penicillin. Took birth control pills til age 31 – had a baby at 32 – had 1st symptoms – L’hermitte’s sign – then optic neuritis – 10 years later, I am doing extremely well – I would put any amount of money that the pregnancy hormone released while pregnant that suppresses the immune system is key to figuring this disease out. I never felt as good as when I was pregnant.

I had a bad case of Mono at a young teenager (13) and was diagnosed with MS at age 40, although I had symptoms as far back as age 34.

Yes, I had a bad case of mono in high school. Diagnosed with MS at age 55, although in hindsight it’s obvious that it has been going on for several years. I just thought I was getting old.

Hi,
I got MONO when i was 10, i am now 20 and am currently getting diagnosed. I started to get strange symptoms at 17 and they went away, i am for the past 5 months i have been expiriencing tingling all over, muscle spasms, painful pins and needles in my feet, poor balance/loss of balance, dizziness/wooziness, hypertonia, myclonus (jerky movements), weekness in one arm, foggy vision, muscle aches, fatigue & much more…i know for a fact they are going to say i have MS when i get my spinal tap

Yes Had a sever case of MONO in High School

No, I can’t remeber having Mono. Not unless it was when I was 2 0r 3 when I had my tonsils taken out. But, 2007 @ age 38 I started having symptoms of MS and had all kind of test done and shown i had ebv sometime in my life.I was told by specialist that @ that moment I didn’t fit the profile of MS. Had to wait and see if it shows itself more. So dealingwith pain/ fibromyalgia.

I had a moderate to severe case of mono when I was in high school (18 years ago). I was out of school over a month and was almost hospitalized.

I’m only recently diagnosed with MS, but have had the same main symptom that led me to the diagnosis that I’ve had for years now – on and off again severe back pain.

Although that seems a strange way to find MS (I thought it was Fibromyalgia), it’s just been recently that the pain got more persistant and severe. An MRI with contrast showed multiple lesions (new and old) in my brain and spine…

I wonder ALSO about the mono/MS link!

IN reading through the above comments, I also saw more than one mention of Strep Throat.

I don’t know if it’s related or not, but maybe it’s a similiar virus to EPV? I’ve had 2 severe cases of strep throat in the past 8 years. Both times there were no issues with my throat at all (!!!) The first time I felt like someone was stabbing me with an ice pick in my bone marrow (weird, I know, but it’s my best description). I was in SO much pain and had to wait hours to be seen at a free clinic. When they diagnosed me with strep I was shocked as I hadn’t suspected it at all.

The second time, I was on vacation and we got snowed in. I had a fever and actually was delerious. My husband was so worried! When we could finally get out of the house, we went to the ER as that was the only doctor available. I was in pain, but not as bad as the first time. The doc there said Strep and gave me antibiotics via a shot in the behind (which did me a world of good.)

Anyway, both bouts of Strep were shorter lived than my mono, but VERY serious and made an impression. I truly think there could be a link with all 3 illnesses and my MS.

I had pretty bad mono in college when I was 21 (December 2002), which left me dehydrated at one point because I couldn’t swallow. I was just diagnosed with MS two weeks ago, but looking back I can see that I remember MS-like symptoms as early as summer 2007. For example, I had a tingling sensation on the left side of my face every time I drank a certain type of soft drink. About a month and a half ago, I had my first major attack which involved most of my body below my neck going numb. After my MRI and spinal tap, my doctor told me I’ve probably had MS for a few years without knowing it, which explains the symptoms in 2007.

Also, I’ve had a numb patch on the front of my left hip since I was about 12. I don’t know if that has to do with the MS or not.

Never had mono. I have had symptoms since 1999 but not diagnosed with rrms until 8/2009.

I had mono when I was 13. I was out of school for 3 weeks. AND…..I’d never been kissed. My MS symptoms began at 18. When I was 19, I was hospitalized for suspicion of MS for 10 days. Left undiagnosed. I saw an immunologist later that year who believed my problems stemmed from a previous EBV and Cytomegalovirus infection. Other doctors thought he was nuts of course. This fella was 80 years old! And low and behold, he may have been dead on it. I became legally blind in Jan of 07 due to complications with eye drops causing me to have a rapid moving case of Glaucoma. I had optic neuritis but it was being treated as Iritis. My health spiraled sownhilll. I was even hospitalized AGAIN with suspician of having MS in Oct of 06, in a very prestigious hospital. Sent home AGAIN with a negative MS diagnosis. Mind you I had optic nerve inflamation, numbness in my limbs, foot drag, major MS hug making me feel like I was having a heart attack but I knew I wasn’t. I also had persistant UTIs. They found lesions on my brain too. I still don’t see how I was sent home without a diagnosis of MS but they said I’d had a mini stroke. I was finally diagnosed In March of 08. I’m happy to say that I’m in remission now. I still have pain everyday. I ride my scooter into town for groceries and goods. I am being productive and enjoying all the good I can find. I am being sued by my X husband after nine years of divorce. He’s suing for full custody of our 15 year old daughter who has Asperger’s Syndrome, OCD and is Bi-Polar. I’ve always managed her therapy and medical issues as well as her school issues. He is upset that I moved across the street from him in reality. It’s nuts. But I wonder how many people with MS have people in their families who are in the autism spectrum. Both MS and autism have at least one link that I know ot….both have high incidents of Vitamin D deficiencies. I saved the artical and can post the link if there is interest. -Betsy

Yes, was diagnosed with MS within a few years of my second bout of mono (never felt the same since) at age 47. I am now 53.

Never had Mono but a close friend in high school did – it’s very likely I was infected and didn’t know it. Diagnosed in 2006 with MS at 33yrs old.

Never had Mono to my knowledge. Diagnosed in ‘81 at the age of 34. Two teenage children had severe cases of mono in 84 and 85. No connection that I can see. I am 62 now with R&r MS. Thank goodness for great PT’s and docs that have kept me going. Still work part time as a college prof and really enjoy escaping into music with kids!

Yes had mono in 1977/78 with pneamonia had almost total paralysis for 10 days whilst in hospital very scary stuff for an 8 yr old during christmas holidays spent that whole summer (southern hemisphere) sick…..had trouble all thru the early 1980s with problems with my knees & legs…..fast forward to 2003 till now & the drs have done various MRIs & scans & have confirmed they can see stuff but wont diffinatively confirm MS but have said there is a strong suggestion & we will keep monitoring symptoms…..

I became very ill last year and in Feb 2010 i had the EBV test done and it was poss. BUT my Dr said i DIDnt have mono that i was just exposed in the past(??). Since the I am developing all the signs of MS and im being sent to Rheumatology Aug 18,2010 for further testing. My mother was diagnosed with MS when she was 31, I am now 33.

I had mono when I was 17. At 31 I was initially diagnosed with acute disseminated encephalomyelitis and then later the diagnosis changed to MS. That was 15 mos ago. My first symptom was loss of speech, brain lesions and later loss of bladder control and the ability to walk. Then my eyesight was affected. I am now able to talk (haltingly) walk (with a walker), my vision returned but randomly will become double vision. Today my face is numb and my left hand tingles. Steroids do not work to lesson the symptoms. Interferon does not help either. The best response I had was to IVIG. I was only treated with it once for five days about a year ago. I do not believe what I have is MS. The onset was immediate. From one day to the next I lost my ability to speak and it progressed rapidly. I am a 32 year old female, mom of three boys. I pray someone will find out what I actually have. My mom is helping me type this. Thanks for listening.

At Age 23 I was diagnosed with infectious mono. At Age 55 on 11/11/08 I woke up with blurred vision in my right eye. I was given an Emergency MRI to verify whether it was a brain tumour or Optic neuritis. It was confirmed that it was Optic neuritis, and possibly MS. After a spinal tap, and two more MRI’s I was diagnosed Oct/09 with MS. I started Avonex Jan/10.

Never had mono. Unremarkable health history, have always been very healthy. No leg cramps. Some mild food allergies issues (i.e. rash from red food colouring) as a child. For three summers as a teen broke out in a rash from the sun. Diagnosed with RRMS at 34 in 2009.

I was diagnosed with severe Mono as a 4th year vet med student at age 25. Have no lesions on MRI but lots of IgG in my CSF along with albumin and every symptom of the disease. No treatment yet. Age 56 next week:)

I am reading these posts well after they were posted, but I’m finding it quite alarming. I had mono when I was 25 and was down and out for over a month. During the mono incident I crossed my legs at work one day and lost all feeling below my knee on my left side for a few months. In addition, I lost strength and feeling in my left arm for the same amount of time. I was referred to a neurologist and was told my mono was causing my nerve irritation. I eventually regained the ability to lift my left foot after about 8 weeks, but my left arm is still very week and this was almost 5 years ago. The neurologist said that I may never regain full use of that arm.

Fast forward 5 years and I oftern wake up with a numb arm etc. and have assumed I was sleeping on it “funny”.

We’ll see what the future holds for me.. Good luck to all of you out there living with MS.

Yes, I had a bad case of mono is the 70’s and was diagnosed wish MS when I was 42…I often wondered about the mono link.

Had a debilitating case of mono at 16. About six months later I was told that I had “chronic mono” by a family doctor because I would essentially have states that were very similar to mono, but it wasn’t acute. I was diagnosed with MS at 30, and have looked back to see symptoms going back to at least around the age of 20, but I did occasionally have bouts of migraines, days of feeling the need to stay in bed and just sleep thanks to sheer exhaustion, and a few other things going back to when I was 16.

Yes …I had a bad case of Mono about 2 years before I was diagnosed with M.S.

Yep…had mono in my teens and diagnosed with MS in my late twenties. Is anybody currently studying this link between mono and MS…could lead to good info re. a cure!

Yes, I had a severe case of mono when I was in grade school. Never consistently felt well after that. Dx with MS in my 30’s, suffered symptoms for years before that.

Yes, I had a bad case of Mono in 1978 and was off work for a month. I was diagnosed with MS in 2000. I always wondered if this was related. My MS isn’t as bad as some folks I know, but having it at all SUCKS! All the medications seem to make me feel worse than not taking them so I don’t. Doctor thinks I should take something, but because no one knows FOR SURE what causes it and there’s no cure, I’m no so willing to do it because it makes my doctor feel better. I’m not sure what to do but keep going everyday.

I never had mono. Diagnosed with MS at age 40.

Yes, I also had mono when I was a senior in high school and was DX’d at 32 with MS but I remember having symptoms of heat intolerance and fatigue before the mono. I was also just DX’d with nummular exzema and rosacea which are all auto immune diseases. Coincidence???

I was diagnosed with Mono when I was 18 years old and have reciently been diagnosed with MS

I had a severe case when I was in High School and a slightly milder case again 3 years later. I am 52 and was diagnosed in 2009. I have SPMS.

Yes, I had mono when I was 15 years old and spent a 10 days in the hospital.

I was dx with p.p. ms in Nov. ‘97, at age 40. Looking back , I had symptoms ( left leg weakness) noticed around ‘88. As to having mono, I don’t believe I had it.

I was DX with RRMS at 57 in Nov 2010. Now DX with SPMS 3/2011.

I had severe mono at age 17 and again at age 22.

I have always had severe fatigue and headaches and right occipital orbit pain since 1974. In 1982 I had an episode of greyed out vision both eyes for about 1hr plus and a half hour after my vision returned… migraines and double vision.

Many … many minor symptoms until I had a disturbing loss of my right side leg and arm strength. I had spontaneous atrophy of muscle in all groups on my right limbs in July of 2010. MRI show cold lesions brain, c-spine, and t-spine.

Looking back at medical records I believe my 1st MS symptom to be about 6 months previous to my second Mono episode.

I am grateful however for not having gone through my whole life knowing I had an incurable disease. We know so much more about it and treatment options than were available in 1970’s

I had mono in 1971 and was diagnosed in 2003.

I am fairly sure I got mono in College. I was so tired I couldn’t walk from one end of the campus to the other. Mono was going around the campus at the time. I also fell wile running for an exercise class. Some thing happened in my knee. A sharp pain, and the leg didn’t extend like it should have. I went down. I got some kind of vertigo that summer also. Bad enough that walking for a few min was imposible. I don’t know if this was from mono,some thing else,or early signs of MS. I started getting anxiety attacks from all the stress and left school with a 3.4 GPA after 100 credit hours tward my BA in Music. I never went back. What ever it was landed me on disability and wrecked havic in my life. Did the mono cause an MS attack? I think there is a connection in there some where.

NO I have never had Mono, my MS showed it’s 1st symptom in 1984 not DX until 1994. As many on here have had MONO it makes me wonder if I did but was not DX as that as i always seemed to have a bad throat/temperature etc so to the Dr’s and more antibiotics!!

Yes, I had mono at age 18 but was not diagnosed with MS until age 62.

Yes! Had mono in my early teens, then at age 17, I was hospitalized with Cytomegalovirus (CMV). After the birth of my first child (22), I was hospitalized with Viral Meningitis. Other than that, I considered myself to be a healthy female. At age 47, I noticed blurred vision in my left eye. After multiple tests I was diagnosed with MS. Its only been 6 months – no relapse as of yet.

I had mono when I was 20 and had my first symptoms of MS

I had mono at 20 and the first symptoms of MS (primary progressive) at 45. I’ve always wondered if there was a connection.

EBV includes mono and other virus, including herpes virus. Even cold sores are considered in the EBV family.

Yes, I had mono in my early 30’s and was diagnosed in my late 50’s. The doctor made a surprised comment when she tested my sample in the office that the reaction was immediate and very strong, much stronger than my daughter’s who had mono at the same time. Sometimes I worry that my daughter will get MS also, if having mono was the culprit.

Yes, Mono at 17, dx in 2010 with ms @ 47. Had numb left arm many times over the years (starting in my 20’s) that I attributed to stress. Much worse at 42 and arm and leg tingling, numb all the time. Then the joint pain, muscle spasms, and fatigue that made me think I was dying. I actually stopped going to the doctor for anything after having a hysterectomy for what turned out to be abdominal muscle spasms, and a physical therapist who blamed my scoliosis (that I repeated over and over again happened overnight…really (!!)) on poor posture, and a primary care physician who would just tell me nothing was wrong. My daughter tried to tell me I was depressed….well, who wouldn’t be…..so I finally saw my gyno for an annual exam, three years after the unnecessary hysterectomy, mentioned the fatigue and numbness and tingling. She sent me to a fabulous neurologist, and I am so relieved to have a diagnosis. I’m now on thereapy, and much kinder to myself and learning to live with my limitations, but at least I am LIVING again!

I had a very serious case of Mono when I was 21 years old. I was hospitalized for two weeks. I do believe this was a factor in my diagnosis of MS as age 39. I noticed things that were not normal when I was in college, but like a lot of people, I just learned to ignore it.

Yes, I had a severe case of mono in the 70s and was hospitalized. Four months later I had a relapse.

yes had a terrible case of mono when I returned from Viet Nam in 1969 then served the remainder of my enlistment at Ft. Hood Texas where I was discharged in 1971, My younger brother also contacted mono from me? at that time.

I have been suffering with PPMS for 17 years, beginning when I was 34. When I was in the second grade, I had a severe case of mono, missing over 100 days of school.

Yes. Severe mono aged 18, off work for 3 months & still weak for another 3 months. Had MS symptoms since then on & off, aged 57 now but only diagnosed at age 45. (went through a myriad of suspected diagnosis of many other diseases first!)

Yes, had un-eventful case of mono as a senior in high school, 1986. Dx with MS in 2005 with scary MRIs. I’ll be curious to hear the odds. A survey of mono-sufferers will of course be needed to see what this virus can lead to. Probably more than just MS.

I had an extremely bad case of mono that went chronic when I was eight and nearly died. I developed Henoch-Schönlein purpura as well as idiopathic thrombocytopenic purpura -ITP.

My platelets were toast, I nearly haemorrhaged to death, my stomach was bleeding and I was lucky my spleen did not rupture. I had multiple transfusions with 4-5 samples of blood taken daily, running out of fresh vein areas to extract blood from. Could not eat for a very long time – would just throw up blood. Had 2 IVs going at once for most of the time I was there – one pumping in nutrients, the other blood transfusions.

I was in the hospital for several months and went down to around twenty pounds at the age of 8. Surviving that made me a very emotionally tough person, very disciplined for pain control, physiotherapy when weakness presented itself, etc.
I had my first extremely obvious MS attack at age 45 but had experienced intermittent exhaustion-fatigue for most my life and occasional weird symptoms like leg drop.

I believe MS occurs with a cocktail combination of genetic factors and stressors added in as well as having sensitive immune systems. I think the sensitive immune system gets set up – could be from vascular issues like iron deposits, etc. thus causing neurological damage from T cells attacking myelin. Obviously if there is white inflammation around where the iron deposits are then they must be triggering something.

I take nothing now for MS.

I took Copaxone for one year. Prior to Copaxone I was only hypersensitive/allergic to Sulfa drugs, cigarettes and any kind of smoke and MSG. Towards the end of the year taking the Copaxone, it irritated my immune system so much that I have now developed allergic reactions to eggs, cheese, milk products, tomatoes, oranges, tea and chocolate.

I quit Copaxone as the hives had developed so badly that I was afraid one might develop in my throat while I was sleeping and suffocate me. I looked like that Eddie Murphy movie where the professor gets really weird large bumps. It took me a long time to get rid of the allergy welts but I still am now allergic to all these new items.

Copaxone – this costing medical between 20,000-40,000 dollars a year – for the chance of perhaps reducing attacks by only 30%. [I could have 3-4 ccsvi treatments (if veins retracted back) for that and definitely have better results] .

I think we have it all backward with specialists for MS.
We should have immunologists involved first, then vascular specialists. Neurological damage is the result, not the starting point – but the resultant point of damage. Neurologists can determine what the resultant damage is.

No. Diagnosed at 38. Just taken part in a sibling study in London to determine whether there is any connection between possible hx of glandular fever and how we all manage it.

Was never diagnosed with Mono, though when I was 16, had a light rash that lasted a couple days. No fatigue or anything else. My mom thought it was rubella. When I was younger, 8? or so, I remember a couple times being achy all over at my lymph nodes, but nothing else. It happened close to a holiday and I thought I had just eaten too much… too much sugar.

Yes, at age 10. MS at age 31

Yes, I had mono at age 25 while pregnant with my first child. Was diagnosed at age 51 with MS but I believe I’ve had it for 15 or 20 years prior to that just because of the strange symptoms over the years. Just prior to my dx in ‘08 i had blood work done that showed I have had Epstein Barr. So I believe there is a connection.

Yes, at age 14, MS at age 50

No Never had “mono”… my sister had it twice, we shared the same bedroom, no MS for her.
Husband had it in college right after we met.
me…MS at 39 in 2007

Yes, I had a bad case when i was 16yrs old, a keen dancer and athlete. I was hositalised and came out in a rash, at the time only 15% get the rash !!! no illness of ANY kind since, a very healthy person. Diagnosed with MS 15yrs later !!!!!!

Yes, I had a bad case at age 18 where I missed my last month of college my freshman year. I then had a SEVERE case of chicken-pox 2 years later. Then 2 years after those scars were still apparent, at age 22, I was dx’d with MS. Did I mention at age 13 I had Guillain-Barre syndrome. Docs say since they affect each side of the nervous system (peripheral & central) that they are not related & I was just doubled-whammied. Yah me!

Yes – I had mono pretty bad when I was 17. Was diagnosed with MS when I was 36. Looking back over several years prior to diagnosis I had symptoms which I can now attribute to MS.

With 90-90% of adults showing signs of having been infected with the Epstein-Barr virus, that cause “kissing disease” it is quite natural for a large majority of MS-patients to also have had it…does not necessarily show a correlation…for instance, how many MS patients have had the flu-virus in the past?

This is facinating reading – I was thinking I am going mad as Drs keep making out I am a malingerer or am making a mountain out of a molehill re painful spasms of abdo chest throat sometimes etc making it hard to breathe sometimes starts in my L leg. I know its starting due to strange sensations in abdo etc and a strange smell almost chemical gets worse as the spasms worsen. I had a really bad case of mono 6 or 7 years ago which hospitalised me for 2 weeks after which I had to limit the study I was doing at uni due to leg weakness (couldn’t walk far without getting dead feeling legs) and brain fog/concentration problems. I also developed these strange muscle spasms at the time I was ill with mono.. took me 2-3 years to fully recover. Have been relatively good for about 3 years and over the past year have had ? fibro same symptoms with tender points 11/18 when tested. I have had during the past year 1 episode of muscle spasms only at night which resolved after a few weeks. I now have them back with a vengeance again started mainly at night when relaxing to go to sleep now during the day as well Drs can’t work out what they are or what is causing them. MRI done a week ago shows periventricular sub corticol corticol and pons white matter changes with a definitive maybe MS diagnosis. Does anyone else have these spasms. My eyesight is sometimes more blurry than at other times but they put it down to age. My Dr says I am too old to get MS. I believe I do possibly have it and it prob started at age 47 or so maybe even before and I didn’t notice I usually ignore pain etc and work through it. I am 55 now.

Kat,

I left other comment but one thing You mentioned got me to thinking. I am 53 now but about 6-7 years ago I had severe leg cramp episodes for about 8-9 months that I could “tell” ( I can’t begin to explain, I just knew they were coming on,…like a picture or feeling in my mind– then they would.) were coming on and I would ride through them very painfully I would have to lay down. I don’t know if this makes sense but this happened, then went away. There have been enough other exciting symptons that have replaced them but the legs cramps were especially distracting for a time. Something you wrote about strange muscle spasms caused me to recall the leg cramps.

I’m amazed at how much I relate to everyone. I remember being really sick as a child in the early 90’s but the doctors said it was tonsillitis. I also remember agonizing leg pains that my mother said were growing pains, they eventually subsided. then Last year I experience vision loss, where everything was a complete blurr for about 30 minutes and since my vision has gotten worse. Then I was diagnosed with migraines with aurora. Finally, in October lab results concluded that I had high levels of the Epstein Barr virus. and had mono. Now I’m experiencing that same leg pain that was in my legs as a child, not only in my legs now but in my arms, along with twitching. I see a neurologist in June,but I think I might have it figured out already.

I had a severe case of “mono” in 1976 when I was 18 and a senior in high school. I passed out during lunch hour, back stage where we performed plays, and woke up an hour after school was over. Went to the DR. the next day and missed 6 wks of school. Luckily I kept up with assignments and had a good enough GPA to graduate.

I always had this underlying “feeling” that I never quite got over the Mono even into my adult years (30’s) and after years of being told I had GAD and panic attacks I finally was taken seriously and had MRI’s of my spine and brain proving the scarring of both;indicating MS.

I still didn’t equate the BEV (mono) with the MS until today. So many things are anecdotal but begin to make sense as I review my life (I am now 53 and 6 months diagnosed)

Hmmn? Something else just occurred to me and I hadn’t thought about this for 30 plus years.

I have read that BEV is a herpes ( or was it herpes like?) virus.

Anyway,… in a TMI moment,I recall a “make-out” session at 18 with a girl who I found out too late had a bloody cold sore and it was a couple of weeks later that I had the MONO attack.

Anyway, I don’t want to be suspicious of everything that ever happened to me but sometimes small clues add up to big things.

Could a poorly planned teen age daliance have in some way ( at least in part) led to my having MS?

On the other hand maybe I am spending too much energy in looking for a cause for something that just is, and has to be dealt with as positively as I can.

If any one reads this, thank you for the moment to ramble on….

I developed severe Epstein-Barr in 2003 that took over my entire body one sensory area at a time: vertigo, vision, hand and fingers dyslexic, emotional roller coaster, sooooo weak, cardiac rhythm not predictable,pins and needles and numbness in extremeties and more………last couple of years a return of symptoms……life on hold and dx is not possible via lumbar puncture due to another condition. During the severe heat the past week 2 ER trips and more disruption of signals and memory shorts have become familiar; better tonight with temp break. Dunno! Wish I did!

If it’s any encouragement, EBV doesn’t cause cold sores. It is in the herpes family, but there’s no outward sign someone has contagious EBV. People can spread EBV without even knowing they are carrying it. When I got it, I was married and certainly not kissing anyone else. My husband has never had mono. He wasn’t kissing anyone else either. I figure I picked it up (maybe someone coughed on me) on a vacation as that’s the time frame the incubation period suggests.

I, too, never felt quite the same after my bout with Mono. Even my husband agrees. And now, 12 years later, looks like I’ve got a whole bunch of MS lesions in my brain.

During some tests when I have been experiencing heart arrhythmia, in my blood there was elevated values of Ebstein Barr Virus. Triple than normal I think.
And I was diagnosed later with MS.

I had a very bad case of mono at age 33. I missed 6 weeks of work, and couldn’t work full time until more than 4 months after onset. Even my liver was affected. About 6 years later, I had a relapse with headaches and fatigue for 3-4 months. I have gotten “mini-relapses” about once a year since, each one lasting from 5-14 days. I most likely have MS. I just learned that I have “numerous” (”at least 15″) MS lesions on my brain MRI. They’ll MRI my neck next week along with a lumbar puncture to see if they can confirm MS.

Do you have any video of that? I’d like to find out more details.

I had a bad case of mono in the late1960s at 16 years old. Just got an MS diagnosis at 59.

Wow! I had a very serious case of mono. I was 15. I was hospitalized for awhile. I am 36 now and newly diagnosed with ms. Very interesting!

my daughter who just turned 40 today was diagnosed with MS at the age of 36..When she was in grade school she had a bad case of Mono, they had her on steroids, finally took her off and she had to go back on them. I think she missed almost a month of school.

I had mono and a severe case of thrush when I was 12. Am 45 now and am having MS-like symptoms. Currently undergoing testing.

Had pretty severe mono in high school and now at age 55 have been diagnosed with MS. I’m pretty certain I’ve had symptoms of MS tho since age 40 with numbness in my feet and “MS Hug”. Just thought I had neuropathy in my feet and thought the hug was just a me thing, so never complained about either to docs.