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.