2012 - Just before the onslaught of MS/ NMO

Sharing day to day life with Devic's. June 2013

After being completely paralyzed from the neck down during January, February and the first part of March, recovery as been a painfully slow process.
Leaving the house other than for hospital appointments have been an impossible task I still cannot face, only adding to how the condition effects my daily life.
Having been prescribed with both intravenous and oral steroids three times in as many months I am now thankfully able to 'furniture walk' for brief periods indoors.
For the last five weeks I have been taking 100 mg of Azathioprine twice daily.
Azathioprine is an immunosuppressant drug, which it is hoped will suppress my immune system in an attempt to prevent relapses.

Coming to terms with the initial diagnosis of MS had been difficult and shook our everyday lives with a strength we could never have been prepared.
Slowly we started to come to terms with the losses we would now endure on a daily basis and prepared to face an unknown future.
A second full body MRI scan was conducted towards the end of March 2013 and the Consultant Professor diagnosed possible NMO. 
Steps taken forwards, sleepwalking back again are the only words to describe what this now meant. We had come so far with acceptance only now to be pushed back to the starting line.
Despite blood tests returning negative for Aquaporin 4 the Professor remained adamant, given the extent of inflammation to my upper spinal chord that a diagnosis should point more towards that of NMO than to MS.

Having now faced up to fear and uncertainty of being diagnosed as a MS sufferer we now had to face up to something it seemed everyone knew very little about.
One of the MS nurses said she had ever known of one case in the last 30 years............
Thankfully by this time I had only injected Avonex once. This had been my choice of treatment as a first line defence against MS relapse. Instead I was prescribed Azathioprine, and despite the possibility of side effects knew deep down that I had very little choice.
The first three to four weeks were worrying. Days of constipation and discomfort were interspersed with a desperate need to visit the lavatory.
Thankfully the weekly blood tests needed to monitor damage to my liver and bone marrow, given the aggressive nature of the medication, are being delivered, at home by the District Nursing team. 

Despite the new diagnosis we remained somewhat in denial. MS had been a bitter pill to swallow but at least it was a condition well documented and had extensive support groups already in place.Devic's on the other hand seemed to be alien ground to most of the medical profession. Confirmation came through for me to attend an appointment at the Walton Centre in Liverpool, one of only two clinics in the UK to specialise in Devics's. After consulting my local GP it was agreed that an ambulance would be provided for the 150 mile round trip from West Yorkshire, across the pennines to Liverpool. Traveling by car, even for short distances was now proving to painful for me and the best way to describe my discomfort was to tell you to imagine rolling around in a bed of stinging nettles. Neurologists at the Walton confirmed Devic's due to the extended length of the lesion showing on my upper spine and the fact I had responded previously speedily to steroids. Another appointment was booked for me to again travel to the centre in 8 weeks.

    

Eight weeks spent taking the 'dreaded' Azathioprine and the initial dose of 100mg daily being doubled to 200mg within two weeks I slowly overcame the side effects stretching the spectrum of either complete constipation or diarrhea. As usual the internet offered its horror stories of what I referred to as my 'nasty' tablets but deep down I knew I had no choice if I were to have any chance of avoiding further relapse.