I noticed the first clear symptoms in January 1997 – pins and needles in both feet that did not go away. Poor footwear, a back problem? I visited an osteopath a reflexologist and an acupuncturist. No luck. I seemed to get worse not better.
The pins and needles were spreading upwards. A friend suggested a chiropracter who immediately said, ‘pins and needles in both feet?’ This would mean that I had two exact and equivalent problems on each side of my back, which was hugely unlikely. He referred me to my GP.
In May 1997, I went to see my GP of ten years standing. I had seen her a handful of times for flu in that decade. She looked up, told me to go away and take more exercise. OK… I felt like a fraud but maybe I would shrug it off.
Over the next couple of months, the pins and needles spread up to my knees and across my face. I had double vision when looking up and sideways. My walking problems became much worse – I was kind of flat footed and walking very slowly, as if I had a broom up my bottom!
My physical difficulties were becoming noticeable to my work colleagues. None of us understood it. I was not tired. Intellectually: completely sound. Just struggling to walk.
In a cab with my boss, I say that I am worried I may have MS.
‘I had a girlfriend who was diagnosed with that,’ he says, ‘I had to leave her. She would have held me back. She was better off without me.’ No doubt!
I go back to my GP and insist on a referral to both a private consultant and an NHS one. In July, I get a letter from my local NHS hospital. They have no neurologist but are recruiting. I will be placed on the waiting list and, when they get one, I will be given an appointment; this is likely to be in one to two years!
Privately, in the same month, I go to see my first neurologist – Dr W. He does a few basic tests. ‘You clearly have a neurological problem.’ Relief.
In my naivety, I assume this is good news. They will tell me what is wrong and cure me. Bliss!
I am referred for a lot of scans and tests. I discover the claustrophobic conditions of every scanner! I know that I am totally unfazed by needles. All the tests show nothing.
How can this be? I continue to get worse. I cannot walk without support. I am in the city, trying to cross the road. I cannot step down a kerb. My colleagues, ahead, turn. ‘Come on, what’s wrong?’
With a huge mental effort, I make myself step forward. I know now that I had lost my sense of spatial awareness – the connection between mind and body that allows you to move confident of safety. My mind was not receiving the ‘safe’ messages and was stopping me from moving.
I carry on. A huge work project was successfully concluded in November – the month of my birthday. EaZyD and I headed off to our favourite country hotel. I took a bath, long and slow, before dinner. I tried to get out of the bath. I couldn’t stand up.
Frantically, I called EaZyD. He was puzzled. I was weeping. He got in the bath, with towel, and hauled me upright. With his help, I climbed, shakily out of the bath. We were both stunned and afraid. We drove home the next day.
In early December, Dr W calls. He thinks I have a blood clot on my brain.
Within four days, I am in hospital. I spend December undergoing huge numbers of scans and tests. They establish that there is a blockage in my spine stopping the messages going through from head to legs. The doctors do not know why.
I now cannot stand, let alone walk! I go home in a wheelchair for Christmas. I go back to hospital straight after the New Year. 1998…it must be a better year?