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STORIES - When No One Knows What's Happening
NYA's Story - PART 1

HOW IT STARTED
It began with vomiting in the latter part of 1996. Everything I took in would come up – even water. I went from one clinic to the other where I would be detained, put on intravenous drips and discharged, but the symptoms remained. In some instances as I was leaving the hospital I would have to stop to throw up by the roadside.

With the combined numbness I had begun to feel, I was advised to see a neurologist. He did a series of tests and admitted me into the largest hospital in Ghana, the Korle-Bu Teaching Hospital. By this time I could hardly move my limbs and the neurologist gave a presumptive diagnosis of Guillam Barre Syndrome. 
He treated me with steroids and vitamin B injections. I began having terrible spasms and was prescribed Carbamazipine. I improved somewhat and was discharged in December 1996 and the steroids were stopped.  

TREATMENT ABROAD
Less than a month later the symptoms recurred and I was transferred to Britain and admitted to the University College Hospital in London. At this stage I had weakness in my right upper and lower limbs. I also tested positive for schistosomiasis (bilharzia). Following treatment with steroids and Praziquantil (a medication for parasites) I improved greatly and was able to begin walking again.

 I was discharged from the University College Hospital in February 1997 and the presumptive diagnosis this time was neuro-schistosomiasis. Again the steroids were tapered off.

On 2nd March 1997, a few days after going off the steroids I became quite unwell and was admitted to the National Hospital for Neurology and Neurosurgery in London. I deteriorated rapidly and needed ventilatory support. It was quite bewildering to wake up in the intensive care unit with tubes in my nose and throat and people lying very still all around me.

My mother, who (God bless her) was with me, and my aunt later told me how I passed out and had to be rushed by ambulance to the operating theatre. 
A repeat MRI confirmed a lesion - an abnormal enhancement in the lower medullar and spinal cord down to the C5-C6 disc.

On the 9th of March 1997 I went through a spinal cord biopsy of the lesion and the results revealed acute, severe demyelination but no evidence of granuloma (or inflamed tissue), schistosomiasis tumor or other inflammation. I was therefore treated with high doses of corticosteroids and made a slow recovery. I came off ventilatory support on 18th March 1997 and was moved from the intensive care unit into a ward.  

REHAB 
I was transferred to the Neuro Rehabilitation Unit at Finchley in March 1997, at which stage I was wheelchair bound and unable to transfer alone. I had to be hoisted from bed into the motorized wheelchair, which I eventually learned to manipulate. I made slow but steady progress at the unit and was able to walk with an aid at the time of discharge in July 1997.

Unfortunately, my stay there was complicated by deep vein thrombosis which was treated with Warfarin (a blood thinner). Because the MRI did not reveal any other lesions, I was not given the diagnosis of Multiple Sclerosis. My diagnosis remained acute cervical demyelination. In view of the biopsy results this was not thought to be due to neuro-schistosomiasis or Guillam Barre Syndrome. 

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