Misdiagnosis left me broke
By Agnes Aineah | April 21st 2019
I started having problems with my memory in 1978 when I was only five. Actions wouldn’t register in my mind. For example, being the last child, I was responsible for locking the door to our house before I went to school. When I got to school, I wouldn’t be too sure if I had actually locked the door and I would run many kilometres back home just to confirm if I had. This happened in so many other scenarios and it posed a challenge to my school work. I would forget everything the teacher taught when I sat exams and though I left most of my examination answers blank, I still managed to score a C+ in KCSE.
At the same time, I couldn’t effectively control my bladder and that coupled with my speech difficulties made my childhood very difficult. Consequently, I had self esteem issues. Treatment for whatever condition was ailing me wasn’t even an option because my family could not afford it. I dealt with my problems by finding a way to get through them in the hope that someday I could get money to get treated.
Towards 2007, my health plunged. I started experiencing numbness on the left side of my body. I also experienced facial paralysis that left me with a drooping mouth, a teary left eye and uncontrolled mucus and saliva discharge. I would bite my tongue without experiencing any pain and would only be aware when I saw traces of blood on a spoon. My co-ordination was going awry and I would accelerate the car accidentally. I didn’t do much about these, having grown up with not-so normal reflexes.
But one day while at work, I read an article on multiple sclerosis. I could relate to the symptoms but didn’t give much thought to the the article and only got very worried when I started finding it hard to walk. I also started having seizures and falling frequently. My body would be so heavy and I found it difficult to raise my legs when I wanted to dress.
I underwent several tests that diagnosed me with anaemia, infection in the blood and even tuberculosis. By the time I learnt that all the diagnoses were wrong, I had spent more than Sh700, 000. All my resources were depleted. I was reduced to a beggar, prompting all my friends to avoid me. Some thought I was cursed. At this time, the quack hospital referred me to a neurologist. I was very bitter with the hospital. I thought all the false diagnoses were a trick to milk me dry.
The neurologist I visited in town sent me for a brain and cervical spine MRI. Further tests at Kenyatta National Hospital are what revealed I was suffering from MS. I went through a period of denial especially after we learnt that the condition is incurable. I only decided to deal with it when I lost a brother through a road accident in 2013. I realised that one didn’t have to be sick to die.
Socially crippling disease
The worst thing about MS is its unpredictability. I could relapse and fall anywhere, anytime and because of that, I carry my medical reports everywhere. I try not to be alone. My wife has never left my side at night since we were married. She never goes out with friends. I do feel bad about it, especially when she stays up all night just to watch over me. She is an angel; my strongest support system. She feeds, bathes and dresses me on days I can’t do it myself. I also appreciate the encouragement and support I get from Multiple Sclerosis Kenya where I learnt that I was not the only one with the condition. There are men and women in the group who were left by their spouses because of their condition.
The pain one experiences with MS can’t go away with just any painkillers. The pain is caused by the fact that MS, being a disease of the nerves can affect any part of the body. Thus, I have always had a problem with my eyes and I almost lost my sight when my optical nerves got swollen. The medics were just in time to correct the situation but to date, I see objects in pairs. And when I put on my spectacles to improve my eyesight, I see four objects instead of one. You would have to live it to grasp how confusing that can be.
I immediately stuck to a regimen prescribed to me by a medic. It includes medication, proper diet and avoiding stress. On the outside, I look fine but it is a painful disease. I eventually quit formal employment to concentrate on a job that I could manage. Today, I sell imported clothes and shoes online. The business requires less commitment and I do it only when I can.
My life is hinged on drugs. Apart from shock, stressful moments, cold and severe pain drive me to relapses. Whenever I experience a severe relapse, my neck and limbs become twisted. I take more than 20 different types of drugs every day. And when I take them at 5pm, I sleep until the following day. I have learnt to live every day at a time. There are days I wake up and feel like a zombie. I think it is because of the drugs. On such days, I don’t eat, I don’t walk, I don’t talk to anybody and mostly, I lack any emotion. I am glad I have a family that understands me on such days. The medication also affects my blood sugars, increases my appetite and consequently weight. My average body weight is 80 kg, and a few times, I have hit the 150 kg mark.
I have learnt to live and accept my condition. I encourage people living with MS to accept themselves and to follow the doctor’s instructions. Most importantly, know what triggers the condition and learn to manage it. MS doesn’t kill.
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