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1997 Archive 2: My symptoms progress

Stiletto Wheels Rev Stethescope

Helpful Advice?

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?

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