Call Me Johnny Five

Our story so far...

I can't really say when everything started at this point.  The current bout started almost exactly a year ago.  I also had similar symptoms that put me in the hospital in February of 2012.  There's a possibility that I can take this as far back as 1994.  We'll start there...

In '94, I had a job in a now defunct department store in a mall that was slowly dying in Camp Hill, PA.  The mall is still there - now bustling - but most of the original stores are gone.  The mall and the store aren't important.  They are just the backdrop.

Something happened one day, the event as unimportant as the location, but it may have set off a series of events that has been and probably will be plaguing me for the rest of my life.  That day I had the first of my stress reactions.  It has not been diagnosed as such, but this is similar to a psychological condition known as Acute Stress Disorder or ASD.

My first reaction was blindness.  I was freaking out in the stock room and someone pulled a shade over my left eye.  Very slowly.  Luckily, we had an eyeglass center in the store I was working at and I knew the optician pretty well.  She was very helpful, calmed me down, gave me drops to dilate the pupil and a pair of the special sunglasses usually seen on older folks to block the sun on all sides.  Two hours later, I was able to see again and went home.

Looking back, I got through it without any trouble, but being suddenly struck blind was a very scary experience.  The worst part is that all I could think about was my blind grandfather.  I was honestly afraid that my sight would never come back, despite our best efforts.

This was the first of three stress reactions.  The next wasn't nearly as bad as the first, though the trigger was twice as bad.

Again, the event and location are not important.  I was now working two jobs at a different, but nearby mall. It was about four years later.  My full-time job was somewhat high-stress, which may have had some influence on the reaction, though I don't think it was the full reason.

One day, my right arm started to shake uncontrollably.  My doctor was baffled as to why it started so suddenly and where it could have come from.  It was labelled as a stress reaction.

I could still work, though it was difficult to get through some everyday activities.  Stopping in to see my parents for dinner elicited quite a few uncalled for jokes, though funny to look back on now.  They told me I could help them plant seed in the yard.   If this was still going on in the winter, I could help evenly spread the icemelt.  When it got to the masturbation jokes, it had to stop.

The palsy took about two weeks to go away.  It slowed down, stopping periodically only to come back for a little bit.  Then it just stopped as mysteriously as it started.

My third stress reaction was by far the worst and the scariest.

When this struck, I was living in Hagerstown, MD at the end of 2000.  Another mall, another department store, more unimportant details.  There were a series of events coming together with work and my personal life that put me in the hospital.

The first occurrence happened in the middle of the night.  Luckily, my boyfriend was there and had experience as a paramedic.  Basically, I was having trouble trouble breathing.  I started hyperventilating, which only made matters worse.  He did what he could to get me under control and I slowly started breathing easier.  I was able to get back to sleep, but the feeling of choking on nothing wouldn't go away.

Within the next couple days, it could have been the next or a couple days later - I don't remember anymore - it happened again at work.  This time was ten times worse.  I couldn't get myself calmed down.  I couldn't breathe and I couldn't figure out what I was choking on.  My airways were blocked and no one could figure out why.

An ambulance was called.  I was rushed to the hospital and the paramedics were able to calm me down on the way.  I was seen immediately by an ENT (Ear, Nose, Throat specialist) who shoved a camera up my nose to see what was going on.  He found the blockage - my own vocal chords.

This reaction caused my voice box to reverse in a condition known as Paradoxical Movement of the Vocal Chords.  To understand what happened, you'll need to have a basic understanding of how the voice box works.  When you take in a breath, the voice box opens to let in maximum oxygen and presumably to make it easier to swallow food or liquids.  On breathing out, the voice box closes to allow air to flow over the vocal chords making it possible to have a voice and talk.  PMVC reversed the movement.  My voice box was closing when I was breathing in, making it difficult for me to take in air to survive.  Hyperventilation was only making matters worse.

I was put on Valium to keep me calm and directed to see a voice therapist to flip the movement back to normal.  I was able to return to work a couple days later, but did not have a voice for a full month.

The therapist worked with me on a weekly basis and gave me exercises to try and resolve the problem.  Through the process I could only communicate in a whisper and had a constant sore throat.  It was not ideal for my job, but I was able to get through the day without too much trouble.

I can remember the day my voice finally came back.  My therapist had given me the suggestion to try and sing along with the radio.  I had an oldies station on and they were playing a series of Doo Wop songs - I think the one that did it was Sherry by Frankie Valli and the Four Seasons.  It was one that I had to jump between falsetto and deep bass - and it triggered something.  All of a sudden, I had a voice again!  I celebrated by talking as loudly to as many people as I could.  It was a day to celebrate!

The doctor never figured out why it happened or how it came on or ended so quickly.  This too was labelled as a stress reaction and added to my strange collection.

Fast forward to January of 2012.

I'm working in a bookstore in Laurel, MD, with a fantastic group of people.  This is the next possible starting point of today's troubles.

Over a period of maybe a month, I was starting to experience bad migraines.  I couldn't figure out why they were starting or what was triggering them.  On a scale of 1-10, most were ranging between around 6-7.  When I was working, I would forget to take lunch occasionally.  I figured I was getting headaches from not eating properly, so I started making sure I was at least getting snacks through the day.

I started getting some strange symptoms before the headaches would hit.  I would have spells of dizziness which would cause my walking to go off-kilter.  I would get extremely tired and start losing concentration.  I would sit down and, for lack of better terms, was struck stupid.  For a period of a few minutes, I had trouble vocalizing - just grunts and whispers - and wouldn't be able to lift my head to look at anyone directly.  This would also trigger worse and worse migraines that would not go away, though would eventually go down in intensity.  We later found out that these are all signs of a possible stroke.

These episodes sent me to the Emergency Room several times.  Each time, I was treated for the migraines with an IV for hydration.  Tests for any brain and heart issues came back negative.  Once fully hydrated, I would be sent home and told there was nothing wrong and to keep hydrated.

The final episode happened at work.  I wasn't responding to a co-worker and I was driven to the hospital.  I was admitted and stayed for almost a week.  No one could figure out what was going on.  I was given medication for the migraines.  The only results that came back from MRIs were a slight bone deterioration in my spine.  I had another episode at the hospital right before my husband and a friend came to visit me.  I tried calling the nurse station for help, but couldn't get the words out.  Luckily, they were right across the hall from me and looked up to see what was going on.  They were rushing in when Jon walked in and they called a code for the doctors to take care of me.

The best description I can give for what was happening is stroke-like symptoms.  I was fully aware of what was going on, but I couldn't communicate and my motor functions were nil.  By the time they finished, I was sweating buckets and white as a ghost.  I had scared everyone,  but they couldn't figure out what was going on.

When the doctor decided to discharge me, I hadn't moved from my bed until that point.  That was when we discovered I couldn't walk.  It was determined that I wouldn't be able to be discharged until I could leave the bed on my own to use the bathroom.

For the next couple of days, a therapist would visit and help me walk in order to strengthen my legs enough to walk with a cane.  The night of my longest walk in the hospital, I was able to get to the nearby bedpan a few feet away from the bed.  I was very excited and was discharged the next day.

I was assigned a neurologist who put me on several drugs for the migraines and sent me to physical therapy to get my walking back.  After a month of being off work, I was able to go back for partial days until I was strong enough to manage.  Several weeks of therapy got me walking again.  The pills managed the migraines for awhile and I was weened off of them.

I had no explanation as to what had actually happened to me and no idea if it was ever going to happen again.

One year ago, this week.

I was working for a world-wide inventory company.  I loved my job and got along with the people I was working with.  Jon and I were preparing to go out to California to visit the in-laws and celebrate five years of wedded bliss.

About a week before we left, I started getting sick.  I was experiencing vertigo when on ladders or on grated floors.  I had to ask for help sometimes to get items off of high shelves.  I would lose balance when shifting from standing to kneeling and back.  I felt like I would get that zoning out, lack of concentration feeling again.  Above all, I was hoping it wasn't really happening.

I figured I was just getting a flu or something, so I didn't feel the need to worry Jon.  I still wanted to take our trip and was afraid we wouldn't if he suspected anything was wrong.

While we were away, everything was fine for the most part.  The only time things were close to bad was while we were walking around the casino.  I was getting tired and starting to get that vertigo feeling, so I was wobbling around a bit.  Again, we were so busy enjoying our trip, I didn't want to worry my husband.

Once we got back, I went back to work.  I started to get worse during longer jobs and finally ended up calling Jon to pick me up from a job because I was having an episode.  I was sweating, non-responsive, having trouble walking, dizzy and couldn't concentrate.  He picked me up and took me directly to the doctor.

That's when everything really started.  Since that point, I've been experiencing excruciating and debilitating migraines.  I've had dizziness, sometimes nausea, and difficulty concentrating.  I haven't been able to walk - walking with a cane and a hand on the wall.  I need assistance going up and down stairs without a railing and it is difficult to navigate those with a railing.  I've also been experiencing ever-increasing pain throughout my body.

My ability to concentrate and focus has gone downhill over the year, as well as my memory.  I am no longer able to drive, because I can't concentrate on the road.  I haven't worked since that day Jon picked me up.  It's difficult to read or do one of my favorite pastimes - playing video games.  I can't stay standing for more than 15 - 20 minutes - just long enough for me to wash the dishes; one of the few household chores I can do anymore.  I can get a simple meal for myself, but no longer cook larger meals for my husband and I.    I can't shower without holding onto the bar for support.  It makes me feel horrible that I can't contribute to the household like I used to.  I feel even worse that I'm the reason we have to try and survive on one income - a task that is increasingly harder as the days, weeks and months go by waiting for Social Security to hear our appeal and reverse their decision.

Over the past couple of weeks, I've been having uncontrollable body spams.  Usually when I'm trying to nap or fall asleep for the night, my arms and legs will flop around like fish on dry land.  They don't go all at once, like a seizure.  Occasionally, both legs will jump or my arms will flop separately.  Sometimes, they link - one arm will flex and trigger the opposite leg to kick.  I've had my back jump and my neck twist back and forth like Linda Blaire.  I'm just missing the green pea soup!

On top of this, I'm exhausted.  I used to never nap, but now I pass out for a couple hours every afternoon.  I'm usually up until 3 or 4 in the morning and sleep until 11 or noon.  The bodily weakness and fatigue is the worst.  I'm not surprised by it - the constant muscle jumping like little sparks of electricity flowing through my body is tiring me out.

I've been to multiple doctors.  My general practitioner referred me to a neurologist.  The only positive diagnosis he could give me was hemachromatosis.  That sent me to a hematologist to see if my symptoms could be a result of that.  The hemachromatosis was brought down to a manageable level and the symptoms didn't go away.  That neurologist was stumped and gave me the impression that he had given up.  His last ditch effort was to give me Botox, which didn't do much to alleviate anything.

Bringing us to today...

I had my second appointment with my new neurologist today.  I had some blood tests and a new cranial MRI to compare to previous tests done.  The tests came back negative - no evidence of anything wrong in the attic.  So, what's going on with me?

There have been a lot of possibilities thrown out there.  Anything from MS and Parkinson's to multiple mini strokes.  There's even been a suggestion that it could be a short circuit of sorts in my brain.  Just call me Johnny Five.

The unfortunate part is that none of these can be diagnosed until all other possibilities have been explained away.  She is suggesting that there is a possibility that this is the result of a mental disorder.  That's not to be confused with thinking it's all in my head, as another doctor told me.  The difference is that a lot of mental disorders can have strange and varying effects, both mental and physical.

She's given me more medication to hopefully alleviate the last of the migraine pain.  The next step is to go to a physical therapist to try and get my walking back.  When I go back in two months, we'll see if there's any improvement.

So, while I'm disappointed that I don't have a solid diagnosis as of yet, it's good to finally have a path to follow to see what is going on.