20 years ago I got up one morning with pins and needles in the soles of both my feet! Little did I know this was the day that would change my life forever!
I thought nothing of it and we went to Birmingham to do some Christmas shopping. When we got home it was still there and I put it down to the new boots I was wearing. The next morning it was still there, but I carried on and went to work. By lunch time it had spread up to my knees and when my meeting finished one of my lovely colleagues brought me home.
It crept on and early evening when I went to the loo I realised I had very little feeling below my waist. Something wasn’t right so I called the GP and an appointment was made at the out of hours clinic for me a couple of hours later. I went in and was sent by ambulance straight to A&E, by this time I was struggling to walk and had reduced sensation up to my chest.
in A&E I was poked and prodded and all my obs were normal. I’d not had a fall, had no injury, so it must have been in my head? Well that’s how I was treated by some of the staff. A few different doctors came and went, the final one a Neurology registrar who told me I was going for an MRI scan shortly, but there was a bit of a wait as the radiographer lived an hour away. This rang the first alarm bell for me. If they were getting someone in and not waiting till the morning then it couldn’t be trivial? I asked the doc what she thought it could be, she rattled off a list of horrid things it could be, none of them trivial! I asked one more question, will I walk again? She coldly replied “I have no idea” and walked away! I was left at 2am, on my own, to sit with that. It was one of the most scary moments of my life!
I went to scan, that was a surreal experience at 3am, and then to the obs ward, where I spent all the next day waiting for news, shuffling around and being told nothing despite my plea’s. I was so happy to see Ian arrive after work. Then at about 6pm a lovely man arrived and introduced himself.
“Hello I’m Dr Allrogen and I know what’s wrong with you”!
Those words will forever stay with me, as will the brief sense of relief! He said I had something called Transverse Myelitis, from T2 down. This meant the whole of my spinal cord from the chest down was affected. He said I’d be going to the ward to be his guest for a couple of months and they’d be doing a lumbar puncture, but in meantime they needed to get me on some strong steroids. I did say I wouldn’t be there that long, and he smiled knowingly and said we’ll see…
I had my first IV of high dose steroids pretty much straight away, my first experience of that terrible taste in the mouth I have since become so familiar with. I went to the ward later that evening and despite having had virtually no sleep in well over 40 hours I was sat on the side of the bed, wide awake, chatting to a nurse at Midnight. Another of the joys of steroids I’ve come to be familiar with.
The next day I woke to see a couple of familiar faces on the ward. I’d worked on the ward a few years previously and it was lovely to see people I knew but very bizarre to be on the other side! This was lumbar puncture day! I don’t actually have any terrible memories of it, it wasn’t pleasant but I’d been given good advice of what to do, so I escaped the worst of the effects. I do however remember an old friend being on the ward, she’d been diagnosed with MS a few years before and was there for treatment, I was very glad to see her, we entertained each other for a couple of hours, little did I know this was to be my future too.
I woke every morning and my first act of the day was to feel my legs to see if any feeling had miraculously returned overnight. One of the staff I knew quite well caught me doing it one morning and found it hilarious, asked if I thought someone had stolen my legs in the night? 20 years later and I have never had that sensation return to my feet! On the upside though, my feet aren’t ticklish!
I played the game, took the steroids, did the physio, submitted to being examined by a long line of medical students. It’s a rare disease you see, so quite a treat for students to get to experience on placement! There are only around 300 cases a year in the whole of the UK! Even less that go on to develop MS, what a rare gem I turned out to be! Especially when I went on, years later, to get a second even rarer disease, what are the odds? I even took part in med student exams.
Every time Dr Allrogen visited I asked the same question, can I go home please? He started by telling me I would be there a long time yet. Then it was waiting for this thing or another to happen. His final move was setting me a test to pass, he clearly thought I had no chance, I needed to be able to do the stairs. When the physio walked past my bed later that day I said we were doing the stairs the next day. We did it! Sheer bloody mindedness, upper body strength and the longing for home got me through! So the following day when Dr Allrogen arrived I had my bags packed. He looked puzzled, my response: “you said I could go home when I could do the stairs, I did them yesterday.” He shrugged his shoulders and sent me off with an appointment to see him a few weeks later and the instruction to keep up my exercises and recover as much function as I could, that this was a one off that would never happen again!
I went home with a huge sense of relief, after two and a half weeks in hospital, a shiny new pair of crutches and the reassurance that the worst was over. Sadly less than 2 months later I’d be back in hospital…
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