The story of Denise
I was diagnosed with Myasthenia Gravis 27 years ago. It all started as I just left school when my left eye started to droop, then over time my arms, legs felt heavy and had trouble lifting them. I went to the doctors who could not find out what was wrong with me, kept having blood test etc., and through that time my health declined quickly. I had double vision, could not swallow, trouble walking, climbing stairs, breathing and saying simple words. My weight went down to six and half stone and even got blown over in the wind. My doctor was getting really concerned so after a year of being poked and having test he said he had no idea what was going on, so sent me to see a specialist. There I was told you are extremely ill and got me into Hospital where I saw a Neurologist. He said he thinks he knows what it is, so transferred to Hurstwood Park, a Neurologist hospital where I was diagnosed with Myasthenia Gravis, MG for short or nickname Ragdoll illness. There I had very painful tests, electro being sent through my arms to test how much percentage of muscle is being used. Once confirmed they transferred me to The National Hospital in London where I had thymectomy operation to remove the thymus. I celebrated my 19th Birthday in Hospital, but I soon picked up. I still have blips which I really get worried as GP’s are not 100% knowledge on this illness as it is rare. Times I have had doctors stumped on how to treat a simple infection, one time I was rushed to hospital due to infection and they just said we keep and eye on you, you can self medicate and see how you go. I was sent home after a week. Myasthenia Gravis affects the muscles, antibodies block the signals from the brain to the muscles, so more you use the weaker you get. I work part time but have to take it easy, the only time it is really bad is when I get a cold or infections, told to have a flu jab. There is a research centre based at John Radcliffe Hospital in Oxford, I have been there once just to check how I was doing. I am on medication which keeps it under control and meet up with the MGA Group.
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