Recurrent EBV??? with neuro symptoms

[TiredPT]

I am a 33 w/o female with apparent recurrent exacerbations of EBV that began in 2002 a few months after the birth of my 1st child.  Had been sick since Thanksgiving with symptoms starting similar to sinus infection (facial pain and sore throat).  After 2 course of antibiotics and steroids, I was admitted to the hospital for IV hydration and further testing.  The mono spot was negative but the other EBV tests indicated either recent or chronic reactivated state.  Since 2002, I have had several other similar episodes, but each keeps getting worse and leaving lasting deficits.  Last March, I had an exacerbation that left me with extreme fatigue, brain fog, severe bilateral facial pain, significant vision changes (had to start wearing reading glasses) right eye worse than left, generalized weakness and a bunch of other stuff for months.  Saw a neurologist in June who saw swelling of the optic nerve and pupil changes that indicated a possible brain tumor or pseudotumor but MRI and lumbar puncture results were normal.  The facial pain gradually lessened, and the vision improved although a blurriness and feeling of fullness remain in my right eye.  In January of this year, I had another recurrence but this time I am having all these generalized neuro problems.  I had severe difficulty with memory, concentration, focus,  and word searching.  I have icy hot sensations in my legs (mid thigh down to feet) constantly and 50% time in my arms (mid upper arm down to hands).  I will have prickling pains in my legs and sometimes my feet have a vibrating or tingling sensation.  During the exacerbation, I had severe burning and cramping in my lower legs -- like you've exercised too hard for too long -- and knee and hip pain that made it difficult to sleep.  The cramping and joint pain has mostly resolved but the burning and icy-hot sensation running down my extremities remains.  The vision has also been affected, not as bad as last year but now having to return to reading glasses sometimes.
My question is . . . . . is this typical with recurrent EBV???  Each time to get worse with progressive deficits?  I am concerned that it could be MS.  I live in a rural area; my physican is trying and has referred me to an opthamalogist and neurologist but I cannot be seen for a few months.  Hoping to get some insight as to whether this is a possibility or anyone else has experienced this.

Thanks

[patsy10]

Your problems sound like more than just EBV to me.  One thing that causes EBV to reactivate is lyme disease.  Lyme depresses the immune system which in turn causes latent viruses to reactivate like varicella zoster and EMV to name a couple.  You may want to get tested for this if you have not already.  Although testing is not very reliable with lots of false negatives.  Lyme causes all kinds of neuro problems, tingling, fatigue, brain fog and much much more.  You could google it and read more.

[Jenny Wren]

I know most of your symptoms all to well.  Mine started 7 years ago, was really sick, had a reactivated EBV infection.  My neuro symptoms started about 3 months after the nausea left.  Have burning, tingling feelings everyday of my life.  All my MRIs are normal, and also my bloodwork.  Not that I am complaining, I am truly grateful for all the good test results, but it doesn't help me to not know what the heck is going on with my body.  Its awful.  Hope you find some answers.   Jen