EBV and MS

I was wondering if anyone here was tested for EBV (mono) before they developed neurological symptoms?  I have been going through alot of testing being that I have some weird symptoms going on with me.  6 years ago I developed extreme nausea, it lasted 3 months, I had all kinds of tests done on my stomach and my gyn ran a series of bloodwork.  The only thing that showed in that round of testing was that I had a re-activated EBV titer.  I never knew that I had mono one time in the past, but according to the bloodwork, I did.  Shortly after the nausea left, I began to have weird sensations on my legs, kinda tickly sensations, like bugs or a hair going across my skin.  These sensations have been here for 6 years, although I have never developed any other type of neurological symptoms, such as weakness, bladder or bowel problems, or any other thype of MS symptoms.  My MRIs have been clear, and neuro says no MS.  My neuro exam was excellent he said.  I live everyday in fear of whats around the corner, but know that something is wrong, it just hasn't shown its tru colors yet.  I just recently read an article stating that the EBV IGG levels are almost always elevated in people with MS.  I was just wondering if anyone else has been tested for this, and what they're outcome has been.  I know that 95% of people have had mono once in their life time, just wondering if anyone else has a familiar story like mine.  Thanks, Jen

[zzzzzzzzzz]

Hi Jenny,
Yes, I had a severe, life threatening case of mono 18 years ago. Was in hospital for some time as I had pnuemonia (pneumonia) with it and the typical, but also severe, toncilitis. I had dangerously high temperatures and that, I am told, is what caused the long lasting problems I subsequently had.
From what I understand, EBV is not Mono. But EBV can cause Mono in around 50% of cases.
I have never completely recovered from the illness - always had problems with fatigue etc - was dx'd with CFS a few years after, but felt I recovered mostly from this before I got preganat with my duaghter 7 years ago - was feeling good and energetic then. But things have gone down hill in the last 5 years really.
I was aware of a link between mono & MS, but when you think about the percentage of people who get mono or EBV, and then look at the percentage with MS..... I would not take it to indicate any likelyhood of developing MS either for myself, or for you.I am still in the process of ruling out MS - in spite of 2 clear MRIs, because of abnormalities in neurological tests - and this frustrates me because while theres the possibility in the specialists view, I am not getting any other dx that could be treated more effectively. I have decided that I probably don't have MS and that what happened to me last year was probaly due to a virus of some sort and what I'm dealing with now, is the lovely after- effects that can go on and on- many of which are very debilitating, but I have to live life as best I can, and worrying about MS will do nothing but make things worse.
Gotta go - talk later maybe

[ekmccart4419]

Thank you so much for writing that.  My dad has MS and I have recently become very anxious about getting it as well.  I have astigmatism so I notice myself reacting to my vision and wondering if it is really my astigmatism that is causing blurriness. I also get so anxious when I wake up in the morning and have a numb pinky/ring finger. It goes away when I shake it, so I know that I have just been laying on it, but I have such anxiety right now due to school, life, etc. I had mono when I was 15 years old and I am very worried about the genetic susceptibility of contracting MS. However, I need to keep telling myself that almost everybody has had EBV in their lifetime, so it does not mean I will automatically get MS/already have it. I just don't know how to relax, but it was very encouraging reading your story.

[shash13]

When I was 24 years old (am now 48) I went on vacation to Matinique and when I returned to the states I was overcome with fatigue. I recall at that time my "gums" were so sore that I actually took a bottle of scotch and spent an entire night sitting and rubbing it on my gums to try and numb them. Went to my dentist the following mng and he told me that whatever is wrong is coming from somewhere else in my body.He suggested I see an Infectious Disease Doctor and I did the same day. Like you, my blood work came back and I was diagnosed with EBV. I spent several weeks sleeping and slowly came back to myself. I always was tired when I think back to my late teenage years.  When I was 30 years old I became pregnant, had a wonderful pregnancy and gave birth to a beautiful son.  Four (4) months after my son was born I had a 24 hour virus running fevers in excess of 102.  Well, that  was when I had a SEVERE exacerbation of what I thought was the first exacerbation and was given a diagnosis of MS. Lost my speech, unable to walk and was virtually helpless.  There were MANY lesions on my brain but, as I am aware of many people who do not test for MS, even with MRIs being performed but, in fact, the MS is present in their spine. It has been a long road of ups and down, good days and bad days and even though I know it is MS there are still many symptoms that arise and the neurologists are stumped.  Do not be discouraged Jen. Have them due to a lumbar puncture (spinal tap) as well as on-going MRIs.  Many people have been told their MRI showed "mini strokes" when, in fact, they were little lesions.  Call the top medical facility in your area and ask for the Chief of Neurology and make an appt. with physicians that are tops in this field and ask how many patients they treat with MS to give you some insight as to how many different forms of MS they have dealt with.  Every single person, without a doubt, suffers with different symptoms.  Good luck Jen and I hope you find out soon.  

[montrealmoon]

I have active chronic EBV.  I also have post polio syndrome, and hypogammaglobulinemia, which essentially means I have LOW IgA, IgG, and IgM.  I have many other symptoms that could indicate MS, but have never really been tested for it.  I am not enthralled with the medical profession right now and am keeping my distance, even though I have been quite ill for some time.  I have an appt. with my PCP this week, and will let her know what has been going on, but I have been sleeping almost 24/7, and my pain has been through the roof.  I don't know what is going on, but am tired of being dismissed by doctor after doctor.