Bells, EBV, bilateral pins and needles - related?

[emako]

I am female, in my mid twenties and generally fit and well. About 3 months ago, my right thumb developed altered sensation. I could feel pressure on it but thats all. It lasted for about 2 weeks, however, I didn't see a doctor as it was gradually improving AND I had slept with a hairband over my wrist (!!) so I thought maybe that was responsible.

About 2 months ago, I had an episode of recurrent high grade fever, extreme lethargy, very bad pain behind the eyes and sore throat - which developed a few weeks after the fevers. EBV serology was positive.

4 weeks ago, I suddenly developed a left sided Bells palsy and was given steroids and aciclovir. I am lead to believe this was probably due to the EBV? Luckily, it cleared within a few weeks

Over the past couple of weeks, I have had pins and needles in both hands and in the feet as well (though mainly hands). It is always there although becomes worse at various points during the day - when it becomes worse, the sensation is also mildly altered. Over the past few weeks, the nature has not changed buthe frequency of the more severe pins and needles is increasing. I have also, over the same time period been feeling dizzy and unsteady.

Otherwise I do not have any other neurological symptoms, aside from brisk reflexes which I have always had. It is now ages since I developed the EBV...I think that my symptoms are probably still attributable to that and I am hoping that the pins and needles will just clear up. Does anyone have any thoughts on this? I don't know whether or not its worth seeing a doctor (the pins and needles are quite bad -  I just dont love going to the doctors!!)

Thanks

[FRC23]

It sounds very much like narcolepsy. Recurrent "Bells Palsy," memory problems, insomnia symptoms, chronic pain, taste hallucinations, smell hallucinations, and twitchy feelings in muscles are actually very characteristic of narcolepsy with cataplexy, and it can be exacerbated by the hormone shifts that happen with menstrual cycles. In fact, often times, people don't have "Bells Palsy," but cataplexy. Viruses, and some vaccines (namely the H1N1) can actually precipitate this, but it can happen seemingly in random fashion, too.

Common misdiagnoses are depression, epilepsy, and migraines.

It doesn't look the way you think it looks. I struggled for years to find an answer, and was misdiagnosed several times. I had it with just sleepiness during the day and what looked like insomnia at night for probably about 15-20 years before I ended up with more serious symptoms of narcolepsy that actually included cataplexy (random muscle weakness that can either be isolated, or widespread). Onset is typically in teenage or early adult years but it can come later, and earlier, too.

The cataplexy manifested first in my face, as what looked like episodes of Bells Palsy that came and went when I was tired, stressed, or even when I was happy and smiling.  But when I paid closer attention I realized I got weakness and twitching (not uncommon) in my other muscles sometimes too, though I chalked it up to clumsiness until I paid attention. I also had issues with my vision randomly and sleepiness.

I went undiagnosed for about 15-20 years, until I finally saw a sleep specialist and she nailed the diagnosis right away. The vast majority of doctors have absolutely no idea what it is or what it looks like, and no routine lab tests, MRI, CT scan, x-ray or anything of that nature will detect it. 75% of people with narcolepsy never get diagnosed in their lifetime.

I was tested for epilepsy, migraines, MS, all kinds of things. But nope, it turned out to be narcolepsy!!

See a sleep specialist!