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In the beginning.......

21 July 2015

Almost everyone with MS has a diagnosis story.  How someone finally turned to them and confirmed “you have multiple sclerosis”.  I don’t.  I have the memory of a bewildering first episode, of numerous tests, specialist appointments, and courses of IV steroids over several months of relentlessly appearing new symptoms.  I remember vividly the relief I felt when I finally met the one who put it all together and gave me a prescription for a disease modifying drug.  But no one ever actually named what was going on. When a patient comes with their own medical degree, apparently some things don’t need to be stated.  But that’s a topic for another time – today I’d like to take you right back to the very start of my MS story.

Optic neuritis is weird.  Others describe being suddenly blind or having searing eye pain and blurred vision.  That’s not how it usually is for me.  My first episode back in 2002 was bilateral. My eyes were fine (picking up perfect pictures) but the wiring behind them was inflamed, so the images took about half a second to reach my brain - creating problems that prompted an ophthalmologist to set up my first appointment with a neurologist.  Getting there was an adventure!

I live close to good public transport, but the ten minute walk with three roads to cross became a near-impossible nightmare. Each time I looked down streets I could see cars – but were they parked or moving?  Only time would tell. Terrified, I inched onto the asphalt, holding up a hand in a policeman’s “stop” gesture and somehow made it safely across. The triumph of reaching the station alive had barely sunk in when I confronted the invisible grey-on-grey ticket machine screen.  Thank goodness for the stranger who did my shopping for me! The profoundly nauseating experience of suburbs whizzing past faster than I could see them necessitated closing my eyes on the train, but I made it – all the way into the city and out to my destination.  Thankful that I’d left myself extra time, I negotiated the kilometre between the station and the hospital.  As the sun beat down on me, my surroundings became progressively less distinct as heat sensitivity declared itself. But my shaking, blurry self did finally find the front entrance of the hospital and the “helpful” information desk lady who suggested “just follow the signs” to find the clinic.

I was very much in need of sympathy from the neurologist who finally listened to me complain that my eyesight was so bad I couldn’t even walk or use public transport safely.  After all sorts of tests he confirmed that – if I took enough time to let each letter sink in – I could still correctly read the fourth bottom row on his chart.  He patted me on the shoulder and reassured me kindly “Oh well. You’re perfectly legal to drive”.


The Unaffected One





Comments (9)

Oh wow! That one knocked me for a six brings back a lot of memories, not fun ones! Having one of your senses not working properly, is truly something people don't understand unless they have experienced this themselves. It leaves you feeling very vulnerable and alone. A truly frightening, powerless feeling. Thank you for sharing. I have no words.

Thanks Rebecca! Having both eyes malfunction at once was certainly a challenging introduction to the world of MS, but I feel incredibly lucky that my vision returned to near normal within several weeks. Getting back something you've lost is an amazing way to gain a true appreciation of it! These days I value my imperfect-but-functional vision in a way I never really did before I'd had any issues. The silver lining to numerous episodes of optic neuritis!

Yes, I agree. Having looked at the world through wonky eyes myself, it is amazing to have them functional again. The world takes on a new and different aura and everything seems to be that little bit more beautiful and precious. It's actually a good life lesson.

Thank you for sharing , it is daunting to have something that you know is wrong and impeding you but not actually be able to explain it to people or have them understand just how much it affects one life or frame of mind. It did take me back to my MS origin story if you will and before it. Reading other peoples stories about their struggles with MS somehow makes knowing there are others out there going through what you are just a bit more real. Again, thank you.

Thanks for that kind comment, Robert, and nice to have you here. It was certainly a very strange and bewildering experience being so unable to function in terms of my vision, and yet to test sort of OK according to simple tests like the eye chart. As you say, terribly difficult to try to explain to another person - even a neurologist - just how impacted and unwell I felt. You are definitely not alone in that one! I don't think anyone who hasn't experienced something like that can fully understand how it feels. But at least other people with MS "get" the experience to some extent. Lovely to meet another one on line who can relate!

"Oh well, you're perfectly legal to drive" - be afraid, be very afraid! What a great comment on our bureaucratic approach to nearly everything... I can't walk or drive anymore due to physical problems, but your post has given me a glimpse into a frightening experience of being physically capable, but rendered functionally incapable due to a sensory deficit. I hope that if you have a similar experience again though, you will take someone along with you for physical and moral support!

Hi Lawrie. You are absolutely right - if I had appreciated just how hard it would be to get there, I would never have tried to reach that appointment unassisted! I have never taken anyone else along to medical appointments, but I certainly should have asked a friend to give me a lift to that one, or perhaps used a taxi. At the time I was completely new to MS symptoms, so I just didn't realise how much worse I'd feel (nor how much more disabled I'd be) once I left home and started walking in the sun. You live and learn!

Thanks TPOE! That was definitely the most severe episode of visual disturbance I've had so far. It was such a relief when it settled! I don't think my sight has ever been absolutely 100% since, but it's back to being functionally fine, and I appreciate it so much more for having been through that experience!