17287389 tn?1455304218

EBV Connection to MS

Hello - First, I should mention that I have not been Dx'd with MS but about 6 years ago, I had a severe case of the "flu" that I never seemed to recover from.  I had horrible fatigue and joint pain that was present 3 months post illness that never went away.  I thought I was crazy but went to the doc and she tested me for absolutely everything and it turned out to be Mono.  She tells me that my EBV antibody titer was through the roof and that I had a abnormally strong immune reaction to the virus.  Fast forward - I have never been the same since.  The fatigue can be profound and has never gone away.  I am no longer able to take long walks, go on hikes or over extend myself without the need for seriously long periods of rest to recover.  About 1.5 years ago, I developed weakness and numbness in my right arm and leg as well as urine leakage - again, that has never gone away.  I have worked very hard to regain the strength and function but it has been very slow going.  If I am stressed, have an illness, or become overly tired it seems to exacerbate the weakness and numbness.  I have seen a neurologist that suggested it could be MS and ordered the full MRI sequencing but I have a $5000 deductible before insurance pays anything.  Unfortunately, I am not poor enough for subsidized health care but not rich enough to carry a hefty medical bill either.  In absence of a formal diagnosis, I have just had to work with my limitations and make modifications to my life but always wondered if the EBV infection was the trigger to my health issues.   To be honest, I do not know what I have but know that is real and has significantly impacted my life.  In addition to the EBV connection, I would like to hear how others have navigated the health system with these types of symptoms and if there is anything that you have done outside medications that has helped you.
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667078 tn?1316000935
98%  the population has had the EBV virus. It is thought to lead to chronic fatigue syndrome. Since so many get EBV and few people get MS it is hard to say EBV causes MS. MS is thought to have a genetic component that gets set off by something in the environment. It might be different triggers for different people.
Unfortunately knowing you have EBV will not help with a diagnosis. No one even knows what MS is. They use a mouse disease they create in the lab as a model for MS but it is not MS.
    The good news is you do not need a diagnosis of MS to treat the symptoms. A GP can give you medication for muscle spasms or nerve pain. The bad news is you can't have the medications to slow progression with out a diagnosis from a neurologist. It cost me thousands of dollars out of pocket to be diagnosed with MS and took two years. I had 5 MRIs,evoked potential, a lumbar puncture, a lots of blood work. It is very unfair.
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Thank you for your response :-)
You are right.  It is very unfair.  I had already racked up just a few thousand dollars in tests and decided that I cannot afford to keep going with this (whatever it is).  I decided it was best for me and my family to just wait and see what happens next.  I do not have the money and my kids need their mom here and not chasing a diagnosis.  Everything else had been ruled out except MS or a brain tumor.    

Here are a couple of pub links regarding EBV and MS.  I have always been suspicious of my hypersensitivity to the infection and the cascade of symptoms thereafter.  I just hope that it stops right where it is at and does not get any worse.  



I had a bad case of EBV in 2007. I already had MS. My spleen even swelled up and I could not talk. I thought I would never get over it. I got these Immune support pills from Whole Foods. They really helped and I got rid of it.
Avatar universal
Hi HeatherLea, welcome.  I'm sorry you've felt so bad for so long.  And sorry that you're having symptoms that make you and the docs suspect MS. That is never good.  :(

Your Harvard link is good, and echoes some other stuff I’ve read. The stuff that I read, (and I’ve long lost the links to them) implicated not simply having been infected with EBV, since as has been pointed out, most of us have had it and yet don’t develop MS, but rather, having had the very symptomatic  kind later in life. That having symptomatic mono as an adult is the bit that moves EBV into the category of being a factor. That would make it a timing thing having to do with the maturity of the immune system and the strength of its response to the virus. And that takes us right back to that as-yet undefined relationship of MS with the immune system.

Like you, at the adult age of 31, I had a very bad time with mono. I was super sick and unable to work for over a month.  I wasn’t hospitalized, but I looked like someone had beaten me with a bat, the lymph nodes in my neck and head were so swollen, and my spleen was enlarged and banging uncomfortably against my rib cage. My bout of mono still ranks as the sickest I’ve ever been, and the longest duration of any infection I’ve ever had. Unlike you however, the symptoms of MS took quite a bit longer to show up for me, with what I would now consider the first inklings, showing up about 10 years later, and for even more years, either being such that I could attribute them to something more common, or not bothering me enough to make me suspect MS until BOOM! I was diagnosed with MS at the ripe old age of 51 (3 weeks shy of 52).

That said, after having read tons and tons, I know that at best, like the Harvard article points out, EBV is probably only one of the factors that are going to be in play in the later development of MS.  In my case, looking back over my life, in light of the list of highly suspected  factors, I can see that my NOT getting MS would have been almost more amazing than getting it.

In the end though, you will never know for certain what combination of factors causes MS (if that is what you have) in yourself or anyone else, and as Alex points out, doctors don’t care if you had EBV back in the day.  They are only focused on their objective tests (neurological function and brain imaging) and your history of symptoms, not your history of infections. I will say though, like you, I lean towards believing that bad cases of EBV after childhood, are probably  increasing a person’s overall risk of MS.

But to more practical matters for you - it sounds like you have only catastrophic insurance, or a family plan that requires you to meet a high family deductible before paying out. Is there any chance that you could switch to a slightly higher-priced plan at your employer’s next benefit election period? I realize that money is tight, and that may not be an option your company offers. If it is though, it would be worth considering more monthly crunch in return for better out-of-pocket outlays and a better stoploss. I will refrain from my eternal rant about American (read: far crappier than most ‘mercuns wan’t to admit) healthcare. Grrrr.

One thing I would strongly encourage you to do if you have not already, is get copies of all records - MRIs done already, bloodwork results, doctor’s notes, and have them for when the day comes and you HAVE to have that MRI (maybe in an ER somewhere), or you move and have to switch docs, find you have better insurance, whatever. Those records are yours, and especially in a situation where MS is suspected, it can take years to get the diagnosis. The last thing you need financially, even if your money situation improves, is having some new doc order everything all over again from square one because he/she has no previous history to look at.

I’m sure some of the others can chime in on the numbness/weakness part.  I’m relatively new to MS, and my case does not include numbness in my symptom list, so I can’t help you there.

Good luck to you,

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