Karen’s Story

Hi I’m Karen, a 40-something single mother of a 13 year old!  I was diagnosed with NMOSD in November 2010.

My story began in 2008 when I was diagnosed with cancer of the thymus gland.  Before this I was your average healthy person who enjoyed walking, camping, and travelling around seeing historical sites.  After the treatment, I took my parents on holiday to Wales as a thank you for the support they gave me.  However near the end of the week, I fell over and sprained my ankle.  We decided to come back to Scotland as I had difficulty in getting around.  I stayed at my parent’s house to rest my ankle.

That weekend numbness spread up to my knee so I went the local A&E department who checked me and said that they thought that I needed to rest it. Over the next 24 hours the numbness spread up my leg to the point where I needed a stick to help getting around.

I had to go back to my house as I was having a new suite delivered.  After it was delivered I fell over and couldn’t get back up. I was rushed into A&E again, but this time I was admitted.

Within the week I was paralysed: all I could move was my head and arms.  I was in total shock and bewilderment as to what had happened.  I had recovered from the cancer treatment, I hadn’t been ill, I was planning on returning to work in a few weeks.
The doctors poked, prodded and scanned me.  However they were just as bewildered as me.

I was given high dose steroids, and within a couple of days I could move my toes and then tap my foot.  At this point I was transferred to another hospital where there were specialists in Neurology.  I was again poked, prodded and scanned and still they scratched their heads as to what was wrong.

I was transferred to the Physical Rehab unit for intense Physiotherapy, and after 8 months of hard graft I walked out of there on crutches.  The doctors had put the paralysis down to damage caused by radiotherapy.

This isn’t the end of my story!  Six months after leaving hospital I ended back there again after a fall in the kitchen while cooking the tea. Again I was poked, prodded and scanned, then transferred back to the specialists to be poked, prodded and scanned yet again!  I was given the dreaded steroids but this time movement did not return.  Finally I was given a diagnosis!  I had tested positive for the Aquaporin-4 antibody and the doctors confirmed that I had NMO Spectrum Disorder. What a relief to be told what I had!  I could now move on with my life and deal with the challenges ahead.

I was transferred to another Physical Rehab unit with the aim to be as independent as I could be at home.  Four months later I was home and I had my daughter back.  My parents very kindly looked after her in while I was in hospital.

I have been told that I am unlikely to walk again and I am now permanently in a wheelchair.  Each day has its own challenge, but equally it has its own achievements.  I am lucky to have a great support network, from carers, to doctors, to the Walton centre, as well as friends and family.