Lisa,
Thank you for writing the post about the link that researchers in Australia have made between Epstein-Barr and MS. Pretty much since I was diagnosed 11 years ago, I have heard that there could be a link, then it was dismissed, then it was "hot" again, then dismissed. I had mono in HS and have always wondered. But like everything else with this disease, what I had may not be what someone else had. This new research seems to be (to me a VERY NON-MEDICAL person) very promising. It doesn't sound like they have it all yet, but it is closer than I have heard in the past at finding something that they could potentially use to prevent the disease from occurring for new patients. Given that I have 2 daughters, this is most relevant to me. I know the risks are still low, but they are higher than the general population and I think about that all the time when I participate in the MS Society events. Without saying it, they are the number 1 reason I try to raise money so that hopefully, they never contract this disease. It has been a relatively "easy" disease for me but that in know way can predict what it would be like if either one of them contracted MS. And that scares me.
Thank you for the post again.
Kristin
Hi Kristin,
This research is an exciting piece to the puzzle. Basically, we need proof of each little hypothesis to piece together a workable strategy to protect those future generations.
Your children are still young, right? It seems like part of Dr. Pender's approach is that children should be exposed to EBV before reaching adolescence. You have the virus lurking around in your body; they may or may not. Should they purposefully be exposed now or not, that's a big question.
Wouldn't it be wonderful to ensure that they would never develop MS? That's the hope.
Lisa,
Many thanks for this one. It is a sensative subject for me.
In addition to SPMS, I was dx with FMS on the day that my MS dx was made definite. OK, fine ;-). I had really bad chickenpox when I was about 7 or 8. That's also connected to active EBV although at the time, about 50 years ago, it was unknown.
Since then both of our daughters had mono as small children. Our older one had it at the ripe old age of 1 year. Our younger daughter had it at age 6. When we told the pediatrician who took care of her that our older daughter had also had it, she added 1 + 1 and said we were probably both carriers even if we never had mono. Today I understand that to mean that we're both carriers of dormant EBV and some genetic link that woke it up in our kids.
Now I'm concerned about our grandchildren. Younger daughter also has FMS. Older daughter is fine so far and I hope none of this pops up in her again. As to their kids, time will tell.
Thanks for this post.
Good health and feel good,
Maris in Israel
I can certainly relate to your response. I have two boys who are, thankfully, very healthy. I have participated in 3 studies but, they dealt with cognitive issues and how blood flow in the brain my affect persons with MS and some other tests and MRI's. I know it won't benefit me but, if someone else can that's great.
I have also had ulcerative colitis, rheumatoid arthritis & psorisis, they come as a package deal. Our family does have a history of Chron's & Colitis. Once again, I have been blessed, after years of dealing with steroids and other not so pleasant treatments. I had most of my bowel removed 12 years ago. Hadn't thought of it since and eventhough, I wear an ostomy appliance, I gained my life back. As an aside there is a positive for smoking, can't believe I'm printing that, it is well documented that one or more of the 300-400 different chemicals stops the disease or makes it less severe for some. I stopped smoking when I had my first child and the bleeding began about 6 mos. later. I put it down to hemorroids, wrong! My aunt and cousin will smoke when their Chron's gets too hard to manage and it slows things right down. This past Dec. I started to bleed again and, thought I'm being told, go get the rest of the bowel and the rectum removed. This was done in March and although recovery was long and frought with many issues, I am completely cured and I don't have to worry about colon cancer, like you'd want to deal with that and MS! My mother was diagnosed with colon cancer in Feb. That's a first that we know of for our family.
It sounds like you were also predisposed to MS and the EBV was the catalyst for bringing the disease on.
I've never been diagnosed with EBV, although I was tested for the virus, for possible mono, because of fatigue issues. This is very interesting research and findings!
I am with kristin, I also worry about my daughter, considering that my mom has MS and now I do too. I don't want my daughter to go through what I'm going through.
As always, Thank You Lisa for the updates and great posts!
I had mono in college and almost lost my last year. I was unable to go to school for more than a month. I could barely roll over to get out of bed to go to the bathroom. My mother & brother had to come & get me & literally carry me from my apt. to the car. I forced myself to return to school although, I don't know how I made it through the day. The fatigue and pain was a challenge. Initially, I thought I was having a reaction to a rabies vaccine I received the week before. I had a vaccine a month prior(need 3 vaccines to raise titres as most of us had not been exposed to the vaccine. I was taking the Animal Health Technician Program at college, hence the need for the vaccine) and did not have a reaction but, some things take longer to manifest themselves. This occured in the fall by Feb. I was feeling much better. Thanks to my friends and classmates who took notes for me, I didn't lose my year.
When my doctor and I started to look back at my medical records after I was diagnosed with MS, back to the diagnosis of mono some of the health issues, tingling in hands & tremors (I've had tremors in my right hand for as long as I can remember) and never feeling like I had a good night's sleep. Being young, I didn't dwell on it too much, pulled up my boot straps and just kept going. You know, things to do, people to see and places to go. Lack of a proper sleep was diagnosed as Restless Leg Syndrome at a sleep clinic 20+ yrs. after the mono. I've had that all my life. The tingling seemed to come and go so, no biggie but, the tremors have never left and I just thought, it's part of who I am. It didn't hinder or interfer with anything I wanted to do and there was no pain. I had mono in 1979. Over the past 30 years there have been all kinds of physical issues that I usually put down to stress, pinched nerves, overdoing an activity but, I was always tired. Perservered, because you can do that when you are young. I'm definately going to download the research results. Mono was my second major virus. I had chicken pox in grade 3 that affected every gland in my body. I hurt so much that I could not even brush my almost waist length hair. This went on for about 3 weeks. Obviously, being that young, I wouldn't remember alot of what I felt. I remember the doctor coming to the house a couple of times as I was too sick to go out. Those were the days, the dark ages according to my adorable children, when doctors made house calls. I only remember, vividly, having to get a pixie cut because we could get a brush or comb through my hair!
There are two times when the Epstein Barre Virus affected me. The more I read, the more convinced I become that those two major viral infections have played a role in my being diagnosed with MS. It all makes alot of sense.
SherryO
Oh, that is very interesting Sherry. It seems that there could be little doubt that EBV affected your having developed MS eventually. It's interesting that I don't recall ever having mono. Perhaps I was exposed to it earlier in life and developed antibodies. I'm sure that the research will continue and eventually the combination of factors involved will be concretely identified.
In case I said this before I'm sorry, but both of our daughters had mono at very young ages - 1 yr and 6 yrs. When the second one got it the pediatrician told us we were both carriers of the virus that causes it, i.e. EBR. I guess the rest developed since then.
The FMS and all IT entails must've come along in my package. Lots of initials after our names lol. Someone should add a DR or PhD. I think we all become those in our research for answers or suppport about our conditions.
Have a great weekend and feel good.
Maris 
I test positive for ebstien barr! Now how do I convince a doctor to give me an MRI since any doctor who knows you look things up trying in vain to diagnose yourself they refuse to do out of sheer arrogance. I have spent my whole life of 48 yrs being sick and have smiled and ignored it for as long as I can. There isn't any time left for them to push me aside since I am so good at smiling at playing the nicities until I get into my car on the way home crying because nothing is being done.
It can be difficult to get a doctor to listen to you, but it is necessary to have doctor which whom you can develop a good relationship. I am fortunate that my doctors are quick learners and that we can work together well. Honestly, I would start with a PCP who is the doctor who should know the most about you and your case.
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It's definitely a promising clue.
I've never been diagnosed with EBV, but I had unexplained exhaustion for several years in my late teens and early twenties. I've always wondered if there was something more to it.
Anytime there is a new clue I get excited about the research to come! Thanks for keeping us informed.
Mandy,
I really like reading about this research and related stuff. It really is promising, not for us personally, but for future generations. Wouldn't it be wonderful to make MS truly a rare disease again?
I've never been disease with EBV either. And to my knowledge, I've not been tested for it, so I can't say if I carry the virus or not. But I most certainly do.
There were so many other research studies and publications I read to try to piece together this article including stuff beyond the one press release/news article. Too much to include, but all very fascinating.