Wednesday, August 15, 2012

This is What I Know For Sure

This is my story.

Keep in mind that as I write this, I can only see a blurry vision where the screen should be. My fingers can't really feel the keyboard, and the once-effortless muscle memory that let me type flawlessly (or near so) is gone. This is the result of the last 5 days of my life.

Friday August 10th started like any other day. I got up, I went to work. Around 10:30, my mouth started tingling on the right side. I'd woken up with a pain in my neck, which I had chalked up to sleeping funny, came back to an excruciating degree. Suddenly, I grew lightheaded in my chair, and when I stood up, I lurched for the door. I went to the freezer to get an icepack, and thought it really odd that no matter what I touched, despite the freezer being covered in icy food, nothing felt cold. I didn't have time to think about though as I grew nauseated and barely made it back to my bed before collapsing in pain.

It passed about 5 minutes later, and though I still felt 'off', I made it through the rest of the shift, signed off, and told my roommate I was collapsing in her room to take a nap.

I napped about an hour, and the moment I woke up, I knew something was very,  very wrong. The tingling that had started in my lips had move through my head, down my shoulder and all the way down the right side of my body. I called out for the dog, and my lips wouldn't move right. My voice sounded raspy and hoarse, and when I stood up, I couldn't get my legs to move under me. I grabbed for my phone any my fingers wouldn't work. It took about 5 tries, but I was able to use the voice-to-text feature to message my roommate, L., that I needed to go to the hospital. She messaged me back asking if I meant now, if I meant I could drive myself, but I just couldn't make my voice answer. She figured it out though and came home immediately, and whisked me off to the ER.

By the time we got there, my head was spinning, I couldn't sit up straight, and I thought I was having a stroke. For all the world, it felt like I had a magnet attached to my right ear, and I couldn't stop my body from moving in that direction.

The ER on Friday... I won't say much about, other than the staff was obviously rushed, busy, indifferent, and uninterested in a proper diagnosis. They decided it was a migraine, and sent me home with painkillers and antinausea meds. Besides the fact that I couldn't maneuver successfully from the bed to the wheelchair without falling over, they sent me home.

Saturday and Sunday, I laid on a cot in our living room, unable to do much at all. If I sat up, I'd fall over. The pain was unrelenting. Going down the hallway to the bathroom was like playing a game of pingpong between the walls and floor, whether walking or crawling. My vision was completely divided; move each of your eyes to the opposite diagonal - that's what I was seeing at the time. The muscles in the right side of my body were almost unresponsive when I would move around - L. said I didn't have my "sea legs", and had to use her body weight to support any movement I made.

Side note - on Sunday, I tried to give myself a bath, thinking it might help relax whatever the issue was. I held my left hand under the water, thinking it was a nice, mid-warm bath draw. When I crawled into the tub, my right side of my body found out that the water was actually scalding hot! Later, when the water cooled and I went back into the tub, it was a surreal experience, as if a line was drawn down my body. My right side was warm and cozy, and my left side could feel nothing at all. Just the motion of the water on my skin.

Monday morning, I called the neurologist the hospital referred me to for my "migraine", and the receptionist informed me that not only is he not seeing new patients, but he's not even in the office all week. The recommended option was to go back to the hospital and to tell them, per the receptionist, that the doctor says  this is NOT a migraine. So, Monday, I landed back in the same ER.

Friday night to Monday morning in the ER was a completely different story. For starters, the doctor actually sat down in the room with me and SPOKE to me, and listened as I tried to explain every little thing that was happening, including the fact that I couldn't tell the difference between hot and cold in my left side.  He immediately ordered an MRI with contrast, and told me that I was going to be admitted.

The next thing I knew, I was laying in the MRI machine, which, for the record, is DAMN loud. Even with earplugs in and memory foam surrounding my head, it was unbearably loud. I knew they found something when I was in there, because a 30-45 minute procedure took 1.5 hours, and the tech kept coming back with promises of "just one more scan of your head...just two more of your neck and you'll be more of the spine...okay, we need another scan of your head...."

After the MRI, I was assigned a neurologist, Dr. R. She very nicely explained to me that they had seen demyelination of nerves in the part of my brain which controls vision and motor function.

Okay, so, in English? Picture the nerves in your brain like wires, each insulated with it's own protective sheath. With any demyelating disease, the sheathes on the nerves spontaneously peel back, leaving the open nerves to cross their signals, with disastrous results for the human body attached.

My official diagnosis, for right now, is Demyelinating Disease of the Central Nervous System, unspecified. We know WHAT is happening to the nerves in my brain, but we just don't know WHY. That's the "unspecified" part of the program - and it could be anything from MS to an unrelated simple virus.

Dr.R started me on a high-intensity steroid IV at the hospital. I also found myself in a pretty snazzy hospital room in the new hospital wing, (I would have enjoyed the giant plasma touchscreen TV on my wall much better if I could have seen it clearly...), and poked with a different needle every two hours. I had shots in my stomach, blood draws in my arm, IV flushes, finger sticks, my own personal heartrate monitor, and a staff of nurses and aides who watched my every move.

And I had a kick-ass roommate, L, who never left my side through all of the madness.

On Tuesday, I had a spinal tap. Now, like just about everyone, I've heard how incredibly painful it can be, so I went into the lab full of fear and tears. I got to tell you, they have a high-tech lab at the hospital I was in. I lay flat on my stomach while an xray scanned my spine and the doctor found the perfect place to stick the needles. Weirdest compliment I've ever received, per said doctor? "You have the perfect spine for a puncture!" Um.... thanks? What does one say to that? The actual puncture itself didn't hurt much at ALL. I think I'm an oddball, or maybe it was the benefit of my nervous system tearing itself apart, but halfway through, the doctor leaned over my shoulder and said, "Um, so normally my patients are in tears right now, but since you're not, would you like to see what your spinal fluid looks like?"

I said sure! I mean, who hasn't been curious about such things, right? So let me tell you, your spinal fluid looks exactly like water. Or, it SHOULD look like water, barring any diseases etc. Yup. I don't know what I was expecting, but now I know, and you know. It looks like water.

Wednesday, today, after one last round of steroids, I got the news I didn't want to hear; I was being discharged. There was nothing else they could do for me in the hospital; I'd had all the medications they had to give me, and there was nothing else they could treat me for.

Let me paint this picture:

  • My vision is still blurry and divided. If I close one eye, I get a single image. If I tip my head slightly to the right, I can get a clear image for a brief moment, but beyond that, I have two distinct views.
  • The numbness and tingling in my right side has subsided somewhat, but still feels like it's on pins-and-needles. 
  • My left side cannot tell the difference between hot and cold. The nerves are completely misfiring with the sensations they DO feel. Resting my skin on this leather recliner feels like I'm resting it on thumbtacks - it's painful. Scratching my dogs fur felt like running sandpaper over my nerves. 
  • My mobility, though I'm not stumbling to the right like I was on Friday is limited. I have to use a walker, and walk very, VERY slowly. My right foot isn't stepping properly; it wants to cross over to my left side. My hands aren't responding like normal; I'm markedly weak on my right especially. Gripping is hard to do. Any motion requires ridiculous amounts of concentration. 
  • My speech is actually somewhat back to normal; a result of the massive amounts of steroids. 
  • I'm exhausted, mentally and physically. 
So where do we go from here? 

Well, I have to wait 12 days for the results of the fluorescence test on my spinal fluid to come back. This will scan for many things, including Multiple Sclerosis. 

In the meantime, I wait. And I hope. Dr. R. says that my nerves should regrow their myelin sheathes soon, but it's a matter of time. With luck, this will restore my body to full function. The downside is that the second sheathe will not be anywhere near as strong as the first, and I may continue to have problems as a result. For example; if I catch the flu this winter, instead of my body getting the signal to vomit, my nerves may decide to make me numb, dizzy, or worse, instead. 

While these nerves are repairing themselves, I can literally do nothing. I can't walk. I can't drive (obviously). I can't see clearly. My motor skills are all extremely impaired. I'll be out of work until I'm cleared by Dr. R. to return, which she says will probably be about a month, if all goes well. Until then, I'm on short term disability. 

If the spinal fluid tests negative for M.S, (which is what we're hoping for, by the way!!!), we'll continue on with other tests to figure out why this happened to me in the first place. There are so many possibilities, everything from gruesome debilitating illnesses, to random chance. When you're under stress, your body can react in unpredictable ways. Responding to a simple virus, my immune system may have decided that instead of attacking the virus, it was going to attack it's own nerves instead. This could have happened once, as a fluke, and could never, ever happen again. (As she's seen in another patient in my age range who had similar symptoms, was very very sick for a long time, and then recovered fully with no replapses). The bottom line is, we don't know what's going on, or if it's going to happen to me again, or how well I'm going to recover from this round. 

All we can do is wait. And we all know how shitty I am with patience, right?  

So here we go. This blog is about what happened to me, but more importantly, what's happening next. I'm going to document this whole process of discovery and recovery. Partly to keep me from going insane with boredom as I can't do much else, (even though seeing and typing is incredibly taxing and exhausting right now), partly to keep everyone in the loop, and partly because maybe, just maybe there's someone out there who's going through this too and could use an ally. 

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