I could say that it began on the morning of the 30th April 2013 when Doctor W rang to tell me the results of my MRI scan. It would be a fitting place to say it began as ironically it was National MS Week.
“Your scan has shown that you have areas of severe Demyelination on your brain & spine” Doctor W said.
“Okaaaay” was my response – I had no idea what he was talking about!
“Do you understand what that means?” he asked me. I debate pretending I understand but figure it’s probably better that I don’t given the circumstances and tell him I don’t.
“It means you have Multiple Sclerosis” Doctor W told me.
“Oh right, that’s okay then, I thought you were going to say that.”
It’s true, it is what I expected & I felt relieved, even more so because for a moment I thought he was going to tell me I had a brain tumour.
“What do you mean?” Doctor W asked sounding surprised.
“Well everything makes sense now doesn’t it?”
“Yes, it does.”
We went on to discuss how for a lot of people it is a very manageable disease and can be relatively benign. Doctor W mentioned that there were different treatments available to help with relapses & treat symptoms but that my next step was to see a neurologist.
But that isn’t really where it began. For me it began way back in 2008 on the 17th of December – the date has always stuck with me, I hues because it was so close to Christmas. I’d had a throat infection which had cleared up but my balance had been off ever since. I couldn’t walk in a straight line – I kept veering off to the right and my head felt heavy. Then on the evening of the 17th I leant down to pick up a cat toy and the world started spinning. Not just spinning, but turning over and over and over… and for about 12 hours I did my best impression of the girl in The Exorcist (I threw up, a lot!). It settled down then, but I couldn’t turn my head or move very well. I rested but a couple of days later the spinning came back with a vengeance I went all vomit girly again! The following day my husband practically carried me into the doctors surgery where I was told I had a fairly severe case of Labyrinthitis – I looked it up on Wikipedia and the description was a perfect match for my symptoms. Drugs were prescribed (Prochlorperazine) and over 6 or 7 weeks I got better – only I never got completely better.
I kept getting dizzy spells and remained on a low dose of medication. 8 months later, after a bit of a cold I started to feel dizzy constantly to the point where I couldn’t face drinking a glass of red wine – a sure sign of illness! My vision was off; particularly my right eye which kept blurring and I kept getting double vision. Reading my book was a nightmare though I did persevere reading with one eye closed – it was a good book, Carol Goodman’s ‘The Ghost Orchid’! Then I tried to go to work a couple of days later but found that the world didn’t look quite right – it felt surreal and when I tried to walk it felt like I was walking on a trampoline. I spoke to a doctor over the phone & they felt it was a return of the Labyrinthitis as again the symptoms matched up, my dosage of Prochlorperazine went up from 1 to 6 tablets per day and after 5 or 6 weeks I was able to get back to work. The doctor agreed to refer me to see a balance specialist.
6 months later I went to see a balance specialist who spent 2 hours running all manner of odd tests to monitor my eye movement including pumping jets of hot and cold air into my ears to induce spinning – really, had I not had enough spinning! He re-diagnosed my episodes as Vestibular Neuritis – I looked it up on Wikipedia & again a perfect match for my symptoms. The balance specialist told me to stop taking the phroclorperazine as it was slowing the healing progress down and so I did. My dizzy episodes lessened other than when I got a cold or was really tired and life got back to normal. Well for about 16 months and then a couple of odd things happened…
TrevisMS 