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Old 10-12-2011, 12:37 PM   #4
heatherhobbie77 heatherhobbie77 is offline
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Join Date: Oct 2011
Location: Fulton, Mo USA
Posts: 36
heatherhobbie77 HB User
Re: Epstein barr virus and possible fibromyalgia

I don't know where to begin - I'm so glad I found your post!! When reading thru your symptoms, I was saying yep, yep - but when you said "forgetfulness" & "not being able to find the right word" I cried. Thats me!! I have the migraines, the tingleing & numbness of limbs, the fatigue, the depression, the problems with standing, the severe muscle pain, twitching & tremors & it is worse upon awakening & then when early evening hits. But no one has been able to understand my mental "fogginess". My family & kids get angry with me because it takes me forever to spit out what I'm trying to say. I feel the word on the end of tongue, but can't speak it. My girls finish most of my sentences for me because of this. And if I dont say what I'm thinking as soon as I say it, it's gone & I cant remember. I've had conversations with my girls that I don't recall having - even tho my cell phone shows the call. I feel like I'm slowly dying & losing my mind. My mother keeps pushing for a psych eval (she's in medicine) & telling me I'm crazy & need help. They've diagnosed me with a congenital fusion of c-spine 5-7, a herniated disc above the fusion & a congenital narrowing of my cord sac, bone spurs - all putting pressure on my nerves. So I've been to nuerologists, nuerosurgeons, spine ortho docs, you name it. They all just pass me from one to another. I have been suffering from neck pain & migraines since a car accident in 1990 in which they now believe spurred my neck problems into deterioration. But Feb of this year is when I went downhill fast.I'm no longer able to work as I don;t the muscle strength to keep hold of objects & I have no neck mobility - so no driving. But your post has truly make me second guess these so called specialists. Because maybe 7-8 years ago I was diagnosed with mono. then my health as far as my alergies & asthsma started deteriorating. I've been hospitalized so many times over the last few years for pnuemonia, anemia, asthsma. My gp keeps telling me I simply do not have a working immune system. Since he didnt seem worried I just let it go. But in 2007 I was diagnosed with Epsein-Barr virus. I was treated (different gp) & my liver enzymes were closely monitored. But then that gp got sick & I went back to my childhood gp who delivered my girls. No one ever seemed to concerned about the virus so I wasn't worried. But my docs because of loss of motor skills & functioning, the lightheadedness & dizziness & passing out & brain farts as I call them, started throwing around phrases like MS, atypical seizures, mini-strokes & so on. I'm not getting answers anywhere & no one seems to be in a hurry to help. So I've been researching everything under the sun that it could be, determined to find answers. Everything I've stumbled upon with my symptoms always showed the Epstein-Barr virus as a connection (although sience says they don't yet know how it's related, just that it is). So now that I've seen your post & can so relate to you more than anyone I've ever met, I'm going to demand new bloodwork - to check liver enzymes, the EB virus & for lyme disease (as others suggested that may be it). It's scary to find out through this board what the virus is & to know it was never properly explained to me & always brushed aside. Please know there is someone out there with your exact same symptoms, feeling exactly how youre feeling & we aren't crazy!! Tell your family that it is medical, you can't help the fogginess or forgetfullness! I understand - I'm not an intelligent woman. I've was on the honor roll all thru HS, went to college, went totech school to become a hair stylist (my dream job - it's the creativness that called to me) & now I feel like an idiot everyday, I don't hardly ever leave the house for fear I'll be engaged in conversation & make a fool of myself. I can't be on my feet for long periods of time anyway & can't use my hands a lot. But I keep telling myself all those things I told you - I try to keep the "stupid" feeling away as best as I can. Just please know youre not alone & I'm determined to figure this out & fight it. I'll keep in touch & let you know if I make any progress or get any new news. I hope you'll do the same! Please be well & take care of yourself!
Heather