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Old 04-20-2013, 12:43 AM
Amy Kate Amy Kate is offline
Junior Member
 
Join Date: Sep 2012
Location: Central Pennsylvania
Posts: 21
10 yr Member
Amy Kate Amy Kate is offline
Junior Member
 
Join Date: Sep 2012
Location: Central Pennsylvania
Posts: 21
10 yr Member
Default Been AWOL.... but am back

Hi All-

I've been AWOL from here since September, and have just now found my way back here. I see there have been a lot of postings since my absence, and I will want to go back and read them and respond directly to any that apply to or were written to me. My apologies.

It's a long story.... but real quickly if I might.... about my "disappearance".

As far as where I stand NOW with my health and the headaches... April 20--- well, no further ahead than back in the fall, unfortunately. In fact, I was just informed yesterday that I am being terminated from my job due to my inability to perform my duties. (ouch!)

Hershey Neuro and Lancaster Neuro have all given up on me. (2 big neurological groups/hospitals in my area). They can tell me what I don't have: I don't have MS, I don't have Lyme, I don't have....... BUT they have no clue what IS still ailing me now, over a year since its onset. So the "mystery that is me still continues to be".

And, I think one of you asked this... yes, I've had many MRIs... and according the the Lancaster Neurologist, my MRIs are a "picture of perfection", so my symptoms and any possible dx/tx is a mystery to him. Which is why I am no longer seeing him.

I just started with a different doc in Maryland... he's an MD, but also more holistic. He wasn't phased at all by my condition/symptoms. Not perplexed one bit... unlike Hershey and Lancaster who are totally confounded.

So, I've had a bunch of blood work and other tests done with this new guy, and have my first follow up appt w him the first week of May. I also have appts set up with a Neurologist/Neurosurgeon which he recommended, as well as an Axis Chiropractor. I've not yet seen either, but the Neuro also works for Johns Hopkins, as does the MD, and the plan seems to be to do a functional MRI to see what areas of my brain aren't acting right. But, it'll be a while till that happens.

I still have the never ending, always annoying headache, short term memory loss and processing difficulties. My balance has improved for the most part.

The new MD theorizes that because I've had so many concussions (at least 6 that I know of.... in my life. Due to sports injuries, falls, car accident... those sorts of things) that my brain has become weakened, and is less able to withstand any kind of attack. So he postulates that perhaps what I've been dealing with is some kind of viral encephalitis/meningitis, or perhaps even an autoimmune encephalitis. But again, it will take time and more tests to see if he's on to something or not.

Again, it's been so long since I've been on here... and a lot has occurred during that time gap.

Wow, I haven't been on here since September!! Well, I know why I disappeared. Hershey thought that my headache was due to low cerebral spinal fluid, that it was leaking perhaps from a spinal tap I had last March (2012) when I was initially hospitalized for this mystery. So they ordered a blood patch for me. Well, long story short, they screwed up the blood patch, and didn't put the blood where it was supposed to go (intra-dura) but rather extra-dura, and thus had a large amount of blood put into me whereby it congealed and was pressing on the base of my spinal cord and nerve roots. So much so that I was practically paralyzed.

I was literally in so much pain from that, that when I'd get an extra stab of pain while walking, I'd collapse. It was horrible.... and took a long time to resolve itself, once the blood finally was absorbed into my system. I did spend a few days in Hershey Med Ctr on the neurosurg unit.... but didn't have any surgery... was just monitored for any lower body paralysis. It was horrible. I ended up using a granny-walker.... and still have a handicapped parking permit yet. But, it was cuz of that goof that I saw a different Neurologist in Lancaster... who was good, but he finally told me he can't figure out what's ailing me (once all that horribleness subsided) and told me to get into U of Penn or J Hopkins. So... that's why I disappeared from here for so long. I was pretty much totally incapacitated. Couldn't drive or anything for like 7 weeks. Basically confined to bed and going to PT a couple times a week- talk about painful!

So... sorry for the big delay. Now that I've found my way back here I hope (and intend to) to stick around!

Now I just need to get all caught up with stuff on here!!

Amy Kate
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