Sharecare4u - NYA's Story - When No One Knows What's Happening

When No One Knows What's Happening
-NYA's Story

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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BACK HOME WITH FAITH HEALERS
I came back to Ghana in August 1997 and the doctors put me on five milligrams of steroids a week. I also started physiotherapy, but would get very tired after the exercises, so the doctor asked me to stop.

As is traditional in this part of the world, when you are unwell, everybody brings ideas and suggestions. Someone introduced me to a group of faith healers and I started seeing them daily. They put me on a diet of rice, unripe plantains and peanuts. By Easter, I could walk unaided, but found the faith healers a little weird and stopped seeing them. This meant I went back to what I was eating before (which is significant as you’ll see later). I was still a bit wobbly when I stopped seeing them, but I was on my feet. I was able to start working, first as a hotel receptionist and then in my chosen occupation, editing and proofreading for my husband’s newspaper, The Accra Daily Mail.

GOING BLIND
In 2001, my eyes suddenly started clouding over. It felt like a shadow was creeping across them. Over a two-week period, my vision had become blurred and I could see some form but no detail. I went to see an ophthalmologist and after a couple of tests he gave me, guess what? STEROIDS. I protested vehemently because of my past experience with coming off steroids and immediately relapsing. But the doctor, who had a remarkably poor bedside manner, asked me to choose between blindness and steroids. Of course I chose steroids and went through the cycle of bloating, bad stomach and all the other side effects of the drug. After a while, my eyesight improved but my feet started dragging as soon as the doctor started tapering off the drug. I decided to come off the steroids and hopefully recover my strength naturally over time. Later I went back to the ophthalmologist and he told me off for coming off the prednisolone unsupervised but put me on Naprosin, which is non-steroidal.

RELAPSE
In April 2003, I had a massive seizure and had to be rushed to the hospital. I was put in the intensive care unit and within a day was back to “normal” and walking again. I was still resisting steroids and this doctor, who didn’t have my medical history, gave me a new cocktail of drugs and discharged me within a week. It was my mistake; I should have gone back to the doctor who knew me and had my notes, but it was an emergency... Everything gradually started going downhill but I thought I could handle the symptoms by doing nothing.

By June I was back in bed, unable to use my left side. All I could do was transfer from the bed to a commode, and before long, even that was not possible. My family had to get an ambulance to rush me back to the hospital on a stretcher one morning.

DIAGNOSIS AT LAST
There was little improvement until October 2003 when a new neurologist was called in. He told me I had Multiple Sclerosis and explained the treatment options to me. He said steroids were the only drugs that would improve my vision and that he would put me on another drug, Azathioprine when he started tailing off the steroids, to prevent another relapse.

There is no doubt about it, steroids are miracle drugs. They immediately make you feel stronger because they sort out the inflammation, but it is the side effects that I am against. In any case, I took the neurologist’s treatment option and slowly things started to look up. He also asked me to start passive physiotherapy.
In December 2003, I took my first steps with an aid and could go back home after three months in hospital.
I am still faithfully seeing this neurologist.

NATURAL HEALING
Someone suggested that I see a naturopath as well, so I started seeing one in March 2005 and he drastically changed my diet.
Within weeks my weight was down and I was feeling lighter on my feet. I went through heat treatment, yoga and meditation, radionics and some sessions on a circulatory machine. I am still on the diet and continue to see the naturopath.
The diet is rigid, mostly vegetables, pulses (remember the faith healers I rejected nine years ago?), fruits and fish and you will have to take vitamins and supplements, and sometimes homeopathic remedies as well. The naturopath will get frustrated if you don’t obey the rules, because it makes recovery slow or impossible.

I have come to the conclusion that alternative medicine is a better treatment for degenerative diseases, or those that orthodox medicine does not quite have the answers to, but you have to be prepared to go through the discipline.

FAITH
But in every trial, your faith is what gives you the strength to carry on. I say to myself constantly that God, who made me in His image, is in control and will bring me back to form. You may call it will power, a positive attitude or optimism, but as far as I’m concerned, it has to come from somewhere. Different people have come to pray with and for me throughout this period, for which I am eternally grateful. I think if you are a believer you should hold onto that faith strongly because really God leaves that decision to us.

I am now able to walk without an aid and everyday I feel my sense of balance returning. In the mornings I can read and do any activity. It’s only when it gets very hot that I have problems with my eyes. My belief is that it is faith in God above all things that has brought me this far.

AFTER WORDS
This is not to say I haven’t had my moments. I have gone through the indignity of wearing disposable nappies, the dreaded catheter, and being turned over by non-professionals because of a shortage of staff at the ICU (in Ghana). I remember on one occasion the physiotherapist had sat me in a chair and was not around when I was tired and wanted to go back to bed. The ICU nurses (in the UK) asked whether I managed the steps myself and I told them the physiotherapist had helped me out. When they tried - four of them - to move me back, I started slipping. Were they sympathetic? No, it was laughter all round which I found extremely humiliating. I put their attitude down to their dealing mostly with comatose patients.
I am a mother of two wonderful daughters. They and my husband have been extremely supportive of me. I can only imagine the stresses and strains they have had to bear, probably even more than I have felt, because I couldn’t see what was happening to me. But it doesn’t show. Our household is full of jokes and laughter. And it is not forced.

DECEMBER 2006
I had an MRI scan in early December which confirmed the diagnosis of Multiple Sclerosis. But my neurologist is leaning towards Devic’s Syndrome (Devic's Syndrome (also known as Devic's disease and Neuromyelitis Optica) is a rare, chronic, inflammatory and demyelinating disease of the central nervous system which resembles Multiple Sclerosis in several ways).

Interestingly in the UK in 1997 when I was pushing them for a diagnosis one doctor mentioned Devic’s Syndrome, but I dismissed it saying to myself, ‘they always find another name to bamboozle you when they’ve no idea what you’ve got’.

Read more about my story in the Common Room, the newsletter of the Achimota School Foundation.