THIS IS MY STORY . . .

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Sep 18, 2013

Around this time one year ago, I was in the hospital!  I never fully blogged about those long weeks because it was too fresh in my mind, but to bring more awareness about mito, I will tell you the story. 🙂

It was a Wednesday.  September 5th, 2012.  To this day, I still don’t know what caused that severe headache.  Maybe it was stress…  A couple weeks before, I began volunteering in my local hospital’s neonatal intensive care unit.  At the time, volunteering didn’t seem stressful to me, but I was still getting used to walking long periods (the spinal cord stimulator I had implanted a year before helped the CRPS pain, but being on my feet for several hours once again aggravated the CRPS and I had flare-ups while volunteering).  Also, I was fighting a cold.

Anyway, that Wednesday evening, I started experiencing a terrible headache at the base of my skull.  I was confused.  I never got headaches!  OTCs like Advil and Aleve didn’t help at all, so those next several days were a struggle.  6 days later, I noticed that my left eyelid was drooping.  I thought it was because I was tired, so I took a nap.  That didn’t help. 😉  Trying not to freak out, I saw my pain dr. that day for a follow-up.  Immediately, he noticed that the droop wasn’t normal.  Thinking that this was possibly due to my cervical instability (I had x-rays a few weeks before for radicular neck pain which showed I have mild anterolisthesis due to EDS), he sent an urgent referral for me to be seen by a spine specialist.  They still couldn’t fit me in for another week, so I headed home, my eye and headaches not feeling any better.  On Friday, my eyelid droop was bothering me so much!  I kept thinking, “What’s going on??”  So my mom called the dr.-on-call at the spine center and told of my predicament.  The resident sent me to the ER, explaining that any facial-related symptoms could be serious.

The attending physician at Doernbecher’s ER wanted me to get some MRIs, but because I had a metal implant in my back, that was contraindicated.  We were in a dilemma.  My pain dr. didn’t want me to get a CT scan because of the high-dose radiation, but the dr. in the ER said that was the only thing we could do.  Despite the risks, I decided on the CT scan, so Dr. M ordered a brain CT and one of my cervical spine (both without contrast dye).  CT scans are incredibly fast, and we had results in no time!  Imagine my dismay went they both came back normal.  I got sent home but had no clue how I’d “make it” another day.

Saturday, my drooping eyelid got even worse to the point that my vision was blocked.  I was miserable, trying to deal with that, worsening headaches, neck pain, and several canker sores in my mouth.  This time, my mom called the dr.-on-call who worked with my pain specialist.  They recommended that I head back to the ER, and they even told the ER that I was coming.  *sigh*

That second ER visit was like night and day!  When I arrived there, I was thrust into a different world.  I remember having 7 tubes of blood drawn.  I wasn’t allowed to eat or drink.  I had to have a bladder scan and urinalysis.  A 3rd year neurology resident came to see me.  I had countless neuro exams (checking strength, reflexes, etc.) by her and a medical student.  I had no idea that I was hyperreflexic throughout and my left leg was completely weak…I couldn’t even resist her pressure. 🙁  I was so shocked that I had a weak leg.

When my parents asked her what she thought was going on, she mentioned that I could have an autoimmune neuromuscular disease called Myasthenia Gravis (which means “grave muscle weakness”) or Multiple Sclerosis but that I need to go through further neurological work-up.  When she left the room, I looked both conditions up online.  Reading the list of symptoms, mine didn’t fully match with either of them.  It was a complete mystery, and I hated that I was so complicated.

Other than a sweet visit from my pain dr. and one from a family friend, the minutes slowly crept by.  At 1:00 AM, I was still in the ER.  My nurse came to wheel me to Radiology where I had 2 more CT scans but this time with contrast dye.  I definitely didn’t want more radiation, but the doctors really wanted more images to check for stroke or carotid artery dissection.  Contrast dye for CT is totally different from that used for MRIs.  When the tech injected the dye into an IV, it felt like burning hot liquid traveling through my body from head to toe.

*side note: I later learned that one CT scan is like standing non-stop in the sun for 20 months.  Ugh.  That meant the 4 CT scans I had would be like standing in the sun for 80 months (more than 6 1/2 years). 🙁  In my hospital bed, I kept seeing a lot of my hair stuck to the sheets.  If I could travel back to that time now, I would have declined the 2 additional CTs.*

At 3 AM Sunday morning, I finally got admitted to my own hospital room on 10K, the neurology floor.  Dead tired, I slipped into the bed sheets without even brushing my teeth or eating something.  I was NPO in the ER, so I didn’t eat food for more than 14 hours.

I woke up at 6 that morning, hungry and needing to use the restroom.  It was still dark out, so I ate a CLIF bar that I had brought in my bag.  I then dozed off for about an hour.  A tech later came to wheel me to Radiology once again where I had 2 chest x-rays.  If I did have Myasthenia Gravis like the doctors wondered, they wanted to take a look at my lungs and see if I had trouble breathing.

My case was very difficult to the doctors.  I had no fatigueable component to my muscles which can indicate MG, but the fact that my drooping eyelid was slightly better that day made things challenging as Myasthenia Gravis can present with intermittent weakness.  But since they were still waiting on pending blood work, the doctors believed I was safe for discharge home.  I was glad!

Up next: Part 2! 🙂

Post written byKerissa

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