"MS can take a hike for all I'm concerned"

January 23, 2011

This is gonna be a long one....!

I figured I should explain how my situation came to be.  This is going to be long, and I'm not going back to edit.  I apologize if there are any typos hah

Two and a half years ago I was working in the online gaming industry.  I worked the night shift and I supervised a team of people that reviewed online poker cashouts for fraud.  I became addicted to the money I made working overtime, and working 65 hours a week was nothing out of the ordinary.  In addition to all this work, I didn't get a ton of sleep, I smoked, wasn't eating healthy foods, and rarely saw the light of day.

My left eye started hurting one day.  It felt like there was pressure behind my eye, and hurt to move it.  I attributed it to working too much and not getting enough exercise.  In an attempt to be more active, I joined the softball team at work.   In the middle of a game, I noticed my vision getting fuzzy.  I brushed it off, and told myself it would get better and I needed rest.

I was in the grocery store with my Aunt, and reached up to the top shelf to grab something when all of a sudden my vision in that eye went almost totally white.  I guess I was still in denial so I didn't say anything and I went to work that night.  The next day, it hadn't gotten any better.  It was as if my eye was a television, and someone turned up the contrast.  I couldn't read anything unless I closed my left eye.  I told my parents, and my mom told me to get to the ER ASAP so off I went.

I was rushed in to see the doctor immediately.  My suspicion is that the triage department thought I had a stroke.  How else does a relatively healthy (to be debated) 25 year old go blind?  The doctor looked in my eye, and told me there was nothing wrong that he could see.  He told me to get rest and sent me home.  Great, thanks doctor!  Big help!

I wasn't happy with the answer I got at the ER, so I booked an appointment with the eye doctor.  This resulted in an immediate referral to the Ophthalmologist, which resulted in being sent to the St. Paul's Hospital Eye Clinic.

Everybody at the eye clinic was very nice.  They diagnosed me with a clear case of Optic Neuritis.  This wasn't news to me as I had been Googling my symptoms for the past two weeks.  Optic Neuritis is esentially swelling of the optic nerve which prevents the nerves from telling your brain what you are seeing.  Hearing my diagnosis was pretty scary.  During my research, I learned that this is usually the first sign of Multiple Sclerosis.  The Neuro-Opthamologist at the clinic told me that this isn't always caused by MS, and not to panic.  They gave me a prescription, and I felt a lot better as I went home.


I was prescribed a SUPER-HIGH dose of prednisone.  Prednisone reduces the welling of the optic nerve and in turn, allows it to heal so that your vision returns.  The clinic did not tell me ANYTHING about the side effects, and I was expecting an easy time.  WRONG!  I had to take 20 pills at a time.  YES, 20!  I was to do this once a day for 3 days.  I felt fine.  The day after I finished the dosage I went to work and felt great.  Within an hour of being there, I started to hear voices.  I put my headphones in, and the voices were drowning out my music.  I realized that I was hearing things, and I walked out and drove home.  I went to bed and had nightmares all night about people killing my dog and woke up with a massive migraine.  I felt horrible.  I drove myself to my family doctor, who checked my blood pressure and sent me to the ER.

My body had gone into horrible withdrawals.  Further research now indicates that people should be tapered down, not totally cut off of this medication.  Why they didn't taper me down, I will never know.  I was in the hospital on IV all day having horrible anxiety attacks.  I'm very thankful that my Aunt was able to look after me that day.  The next day I felt better, and within a month my vision had come back.  I was happy, and thought I was done with it.

Shortly after everything happened, I was sent for an MRI.  My MRI came back normal with nothing of any interest on it. 

I continued working and life went back to normal.  August rolled around, and I noticed something wrong with my right eye.  The pressure came back and the pain with movement.  I knew immediately that it was happening again.  I called the eye clinic, and they sent me to the MS Clinic at Burnaby General Hospital.   I had dealt with the neurologist there before, and found it extremely hard to communicate with her.  She looked at my chart, looked at my eye, and the only thing she said to me was "You have MS", she then walked out of the room.  I was by myself, and obviously started crying.  My boyfriend was in the waiting room, so I asked the nurse to bring him in.  He comforted me, and the nurse came in to talk to me about treatment.  She explained that one episode of Optic Neuritis doesn't necessarily mean anything, but two episodes make an easy MS diagnosis.

Because of my previous reaction to the steroids, it was decided that I would be admitted for three days of Solu Medrol.  Solu Medrol is also a steroid, and is delivered through an IV.  I had no reaction this time, and my right eye healed extremely fast.


One of my sister's old roommates had also been diagnosed with MS.  I was put in touch with him, and he told me about the UBC MS Clinic.  It sounded much better than Burnaby, so I went to my family doctor and he sent off a referral.  During my first appointment at UBC, I knew I made the right decision by switching doctors.  I learned all about the disease, learned that they CANNOT diagnose you with MS solely based on having two episodes of optic neuritis, and was promptly scheduled for another MRI.  My MRI came back normal again and I was scheduled for a Spinal Tap.  There are proteins in spinal fluid which can be used to detect Multiple Sclerosis.

Everybody told me that the Spinal Tap would be painless.  Well, either those people lied, or I'm just a freak.  Either way, it was the most painful invasive thing I've ever had done to me.  She used two doses of freezing, and I still felt the needle going into my spinal column.  My boyfriend was there, and I leaned over on them as they were collecting the fluid.  I couldn't stop crying, and I drooled everywhere.  Needless to say, no more spinal taps for me.

The results came back earlier this year and the diagnosis was Multiple Sclerosis.  No huge surprise, but there's always a little glimmer of hope that the results would have come back differently.  My doctor didn't recommend any course of treatment yet because my symptoms were limited to the previous two flare ups, and my MRI was still clean.

Everything was fine again until August 2010.  I felt great, and noticed the vision in my left eye was fading again.  I had no pain this time, but my vision faded out within a couple of days.  I was admitted back into the hospital for three days of Solu Medrol.  My vision came back within a couple of weeks.

Because of my third flare up in two years, my doctor recommended I start an injectable medicine called Rebif.  More to follow in regards to that.

I hope this wasn't too boring.  It feels good to get the whole story out.

~Sarah

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