Shift.MS did a great series called Animated Symptoms just before Christmas which brought each symptom to life from real life stories in the form of brilliant animations.
Here is Kirsty’s experience with Optic Neuritis and I’ve written a little about my experience below.
MY EXPERIENCE: Six months in to my MS diagnosis I experienced my first relapse in the form of Optic Neuritis. Optic Neuritis is the name for inflammation of the optic nerve. This is the nerve that carries messages from the eye to the brain and my messages were well and truly confused.
OPTIC NEURITIS ONSET: One day I woke up one day to a blurry patch floating around in my left eye, as if something had flown in to my eye but no amount of blinking was making it any better. Over a two or three day period the blurry patch grew bigger and bigger and this was shortly followed by a sharp pain at the back of my eye every time it moved it from side to side. I tried resting it, closing my eyes, laying in a dark room… nothing was working. I decided a trip the the opticians was in order as I was yet to connect the blurry eye sight with my MS diagnosis. The opticians said they couldn’t see anything wrong with my eye sight at all but given what I was describing and experiencing he sent me to Moorfields Eye Hospital. Hours later I was essentially told that this was clearly Optic Neuritis (Inflammation of my Optic Nerve) and had been brought on by the MS and unfortunately was just something which would get better with time.
STEROIDS: After approximately four days living with the blurry eye and reoccurring pain I caught up with my GP and my MS Nurse who decided it was best I start a course of Steroids. 500mg a day for 5 days. THIS. WAS. BRUTAL. I actually don’t know which was worse, the Optic Neuritis or the treatment for the Optic Neuritis. (I have since found out that everyone reacts differently to them so please don’t let me put you off if this is an option you’re considering.)
The story of my experience with Steroids starts with how bloody AWFUL they taste. I had to coat them in chocolate to be able to take 5 x 100mg tablets in a row. I felt like I’d swallowed a monster. Initially they made me feel incredibly sick and nauseous, but this soon turned in to a burning rage, an aching from what felt like all my bones and joints. I experienced a headache like never before stemming from indescribable tension in my shoulders and as the tension rose the tremors set in. I lost around half a stone over 5 days and it was just the most awful experience everywhere in my body EXCEPT for my left eye… the dust seemed to have settled and the inflammation reduced. Clear as day, I could see again.
The effect that optic neuritis can have on your sight varies from person to person. It can range from blurred vision to a complete loss of sight so it’s really up to you and your MS Nurse / GP to weigh up the options on how to best treat it.
One year later the side effects of steroids were clearly a distant memory and something of the past because when Optic Neuritis returned, this time in my right eye, I was right back on the Steroid rollercoaster of hell. I learnt my lesson when it returned for the third time (back in the left eye) and decided to just ride it out which took approximately 3 weeks to fully return to clear vision.
It’s been 4 years now and my eye sight is doing just fine (touch wood) but at least I can use my past experiences to inform me on my decision if or when it ever returns.
Have you every experienced Optic Neuritis? If so I’d love to hear from you to know how it may have differed from mine or Kirsty’s experience.