My Whirlwind Diagnosis | Multiple Sclerosis

Anyone who has gone through a diagnosis knows that no matter how many people are supporting you, you are utterly, and completely alone.  My diagnosis felt like it was never going to end.  Ironically, I was craving a diagnosis by the time I actually got one, simply because of the grueling process.  I have a feeling others can relate…

Here’s what happened to me.

I was sleeping over at a friend’s house and woke up in the morning super pumped to spend the day with my friend, when I realized I felt sick to my stomach.  I crawled back into bed, thinking I got up too quickly.  Boy was I wrong!  Waking up with what felt like the flu led to three months of total chaos.

Mom picked me up and took me to the doctor right away.  I immediately had a room because no one wanted a 12 year old girl throwing up in the waiting room with other kids around.  I was incredibly nauseated and could not control it at all.  And guess why?  Because, as my mom discovered, my eyes were rapidly moving from right to left.  Which the doctor completely ignored!  My mom told her several times and she just kept walking out of the room.  When my mom peeked outside the room, she discovered the doctor sitting at a desk with an encyclopedia…not the most comforting sight for a mother.  To top things off, I was also experiencing tingling in my fingers and toes.

So, without a clue as to what was going on, the physician just ran a ton of blood tests – day after day.  I had never seen so many tubes filled with blood in my life.  But nothing showed up.  The doctor tried to convince my mom that it was just a severe flu.  One thing I learned at that young age is NEVER doubt a mother!  Moms know everything, and they definitely know their own children!  Thank G-d for her, because my mom pushed and pushed until I was sent to another doctor.

I love my Mom!

The best way I can describe the feeling of those first few weeks is like being on a Merry Go Round and constantly switching horses.  Purple horse, yellow horse, moving horse, stationary horse, pink nurse, green ophthalmologist, orange radiologist…on and on.  I thought it would never end.  It was the ophthalmologist that finally recognized something neurological was going on.  At that age I did not really know what “neurology” was, but I knew I did not like the sound of it.  Well Neurology is the science of the nervous system which includes the brain, spinal cord, and other nerves in our body.  But wait, sorry, we’re not at that part of the story yet!  The ophthalmologist sent me for an MRI.  My mom knew how things worked in a hospital and immediately responded that it would take months to get an MRI.  We were reassured that “this time would be different.”  It was incredibly eerie when we got down to Radiology (where they do all the x-rays, MRIs, and CT-Scans) and they suddenly had an opening for me that same week.

It was even creepier when during my MRI a doctor came down to see how things were going.  After looking at my first images that doctor asked the Radiologist to send us to Neurology immediately…  The icing on the cake was getting out of the MRI and having the Radiologist tell my mom to take me out for ice cream.  Everyone knew something was wrong, they just did not know what it was.

The Waiting Game

This “unknown” went on for weeks, which turned into months.  My symptoms changed:  my eyes stopped jumping right to left and I started seeing double; the tingling in my hands went away, and the tingling in my toes went all the way up my legs.  I had seen several doctors at medical centers all over California, had countless blood tests and other tests done including two spinal taps, and had missed 60 days of school before anyone gave me an answer.

After three months of complete chaos and uncertainty, one doctor finally had an answer.  I remember that day so vividly.  Dr. Myers at UCLA sat down with me, not my parents, me, and said “you have multiple sclerosis.”  He knew that I had no idea what that meant.  He patiently described the ins and outs of the illness, the implications for my life as a student in middle school, and the ramifications for my future.  Up until that moment I felt like my life was upside down and I was craving some stability.  My fears of a possible brain tumor were only the tip of the iceberg.  Now that the nightmare was finally over, I could step off the roller coaster and begin to pave a fresh path for myself.

There were some incredibly uplifting moments during my diagnosis which I am sure I will share with all of you one day in an upcoming blog post.  For now though, feel free to post here similar “diagnosis horror stories.” I’ve heard so many over the years, I know everyone has one.

Oh and going back to that first friend where I slept over.  Well it probably won’t come as a surprise that after that morning, we had a pretty strong bond and Elana Felkai and I are the closest of friends to this day.  Every time I think back to my diagnosis, all I can think of is how glad I am that it’s over, and I will always cherish the moment it ended, the moment I got my diagnosis.  I am sure some people feel very differently about their own diagnosis, but to this day I operate on the tenant that knowledge is power and am relieved to have emerged from the darkness.

My friend Elana