Maria's Story "Oh I know you. You're the lady who walks as if her feet really hurt". My companion on the town bus stunned me with this observation. My feet didn't hurt at all and, as far as I knew, I walked in a perfectly appropriate manner. I asked my husband later that day if he thought I walked in a peculiar way "well" he replied somewhat sheepishly "you do rock a but, I've been meaning to tell you about it" Being a head teacher and a fitness fanatic, I put it down to over tiredness and thought no more about it until a few months later at the infant school disco. I always used to pick up the shy ones and dance with them in my arms, much to their delight. Not this time. I couldn't lift a single child. This was worrying but, again, I put it downt o being over tired and my GP agreed, especially since I couldn't seem to replicate my unusual rocking gait for him and I was able to lift a pile of heavy books with ease "Over worked, stressed, menopausal heat teacher" he pronounced and prescribed iron and vitamin B tablets. The summer holidays also intervened and I returned to school a new woman but, as the term wore on, other strange things happened. With an enormous pile of invoices to sign at one month ened I found that my hand had turned to rubber. I could get halfway through a signature, and was forced to rest for a moment of two before continueing. Then there was my voice. Now I am the one teacher who, throughout her career never needed a whistle, even in the playground. My booming voice always carried very clearly to wherever it was directed yet now, parents started complaining that their children couldn't hear me in class or in a school assembly. Then one day, dismounting from my cycle in the playground, my right leg just vanished. It simply felt as though it wasn't there and I fell to the ground. Surrounded by concerned children who helped me up, I found there was nothign wrong with my leg at all. I could stand on it, walk and generally perform as normal. What happened next? By this point I has an appointment with a neurologist, who after and MRI, reassured me that I did not have Multiple Sclerosis or any number of neurological conditions he had wondered about. Meanwhile I had also done my homework and felt that the only condition that totally fitted my symptoms was myasthenia, an asymmetrical, fluctuating neuromuscular weakness. It can't possibly be myasthenia...you're to strong and fit “It can’t possibly be myasthenia”, he snorted, “you are far too strong and fit,” he added as an afterthought, as if this proved his case. Well I did nearly bruise his fingers when he asked me to squeeze them, but then I was a very fit woman. I think he too had mentally stamped my medical notes with ‘overworked, menopausal, head teacher, but he agreed to make another appointment six months hence when I refused to accept that there was nothing really wrong with me. Tell us more about your symptoms More than a little exasperated as I left his office, I wondered vaguely why I saw two of him. At school a few weeks later, someone remarked how tired I looked and it was only 10 am! I didn’t feel in the slightest bit tired, overworked or anything else other than normal. Irritated, I made my way to the ladies toilet to retouch my makeup and stared at the reflection in the mirror. My eyelids were half shut and one side of my face seemed a bit more droopy than the other. This wasn’t me. Neither was it like me to fall off my box in a step class at the gym or be unable to eat my tea without propping my head on my hands. It wasn’t like me to be unable to blow up balloons for the Christmas party. I had always been the school’s unofficial balloon pump due to my enormous lung capacity, but now I couldn’t even close my lips properly around the balloon neck. It wasn’t me to be drinking coffee in the staffroom and suddenly have it pouring from my nose. Things began to deteriorate rapidly from then on. I could only cycle to school. Walking was out of the question as I couldn’t carry my briefcase or walk up the hill without getting really breathless. As if to prove my GP right, however, I seemed to recover each school holiday. Then, one day, as I was about to do a Bible reading in front of the whole school, I began to slur my speech. I sounded as though I was totally drunk. I just managed to sit down and ask someone else to do the reading when my head dropped on to my chest and I couldn’t lift it. Pretending to find my shoes especially interesting, I made a resolve to get an urgent appointment with the neurologist. A few minutes later I was fine and left the school hall under my own steam, telling everyone not to fuss. Needless to say, rumours began to circulate around our small town after that. Mrs Teanby had been drunk in front of the children and was falling all over the place was one of the milder stories. A special governors’ meeting was called and I was summoned one evening to explain my odd behaviour. It being very late in the day, I was at my weakest and most incomprehensible. My annoyance at having to attend this meeting made it even worse, so that by the time I was asked a question, I sounded like someone with the worst form of cleft palate. My eyes also closed completely and wouldn’t open. I suppose it was fortunate really as they could see that I was ‘ill’ and recommended that I take a month off work to get myself sorted out. What happened after you were diagnosed? During this period I was admitted to hospital and diagnosed with myasthenia. I felt an enormous sense of relief then, even though I knew the condition was incurable. From the appearance of my first symptoms to this final confirmation of what I knew to be the case, had taken nearly three years. Three years of frustration, fear, embarrassment and anger at being misjudged, disbelieved and pigeon holed. After treatment, I improved dramatically. Even before I left hospital I was able to run up three flights of stairs without stopping and was delighted to be getting back to my old self. Except I never really did. A return to work produced a catastrophic relapse. Some days I was in a wheelchair, I could no longer teach, as I couldn’t speak, and evening governor’s meetings were out of the question. There was really no choice but to seek early retirement. The wheelchair wasn’t a problem, but speaking is most of what you do as a head teacher. How has MG affected your life? Twelve years on, I am fit and well and go to the gym three times a week, where I cycle and lift enormous weights. Being three times as strong as most women of my age means that, despite the MG, I can lead a relatively active life. By bedtime, most days, however, my neck is in a collar to support my head and I have some difficulty moving about. If I want to go out in the evening, I have to rest all day or even for two days. I still can’t carry things for any distance and, from time to time, my double vision is so bad I can’t drive. Occasionally a hand, arm or leg will turn to rubber and, being unable to lift the front of my feet properly I trip and fall on a regular basis. Our local hospital is quite used to patching me up in ER and find the many and varied ways in which I injure myself rather amusing. Sitting on a pair of hot curling tongs and being unable to get up was the worst. Oh, and I can’t sing anymore and my public speaking days are well and truly over. Do you think enough people know about myasthenia? No, my main annoyance with myasthenia these days is that nobody has heard of it. Folks find it hard to relate to the fact that I sometimes have to refuse invitations out. They just can’t see why. “But you’re so fit and well!” I am, but I have this invisible handicap that can let me down, literally, at any time. And it does.