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My story of living with myasthenia gravis for three and a half years before I was diagnosed

Catherine Ottley, 64, from Terling in Chelmsford, lives with myasthenia gravis and was diagnosed 12 years ago at the age of 52.

“I began having symptoms at the age of 49, not knowing it was myasthenia gravis. I was living in a farmhouse with my ex-husband and our son and daughter, who are now 32 and 33. We had horses which I rode every day and became a huge part of my life

“When my husband and I split up, I started to experience symptoms that I put down to stress. I was getting double vision and didn’t know what was going on. Prior to this, I hadn’t been to the doctors for ten years, but I knew I needed to get this checked out. After my initial visit, I went back and forth for months on end, as my GP couldn’t pinpoint what was wrong. He put it down to stress regarding the breakdown of my marriage and kept sending me away.

“My symptoms progressed and I began to feel very weak every day and the double-vision increased. My left eye began to look up whilst my right eye stayed where it was. I couldn’t tell distances and kept bumping into the wooden beams in our house. I kept asking my son if I looked normal.

“One day when I felt particularly unwell, I drove to my GP’s surgery and he took one look at me, told me not to drive home, and did a series of tests on me there and then. One of the tests was for me to shut my eyes and stand up straight, but when I did I felt like I was falling backwards so he sent me straight to hospital.

“I was taken into Broomfield Hospital for three weeks and I saw a neurologist who ran more tests, but they couldn’t find out what was wrong. In an attempt to get a diagnosis, they even asked me to attend a conference for doctors, and stand up and tell them my symptoms. Despite this, but no one could pinpoint what I had.

“I was getting worse and worse and kept persisting and going back to the neurologist who then said he would send me to King’s College Hospital for further examination.

“At Kings’ they couldn’t identify what was wrong. I was feeling desperate at this stage. I was so weak, my elderly parents were having to take me shopping and I would get to the supermarket and just sit on floor with exhaustion. I had had enough.

“When I went back to Kings for a further appointment, I was referred to another neurologist who was also an ophthalmologist. He was fantastic and I thank God for meeting him.  A friend of mine came with me to the appointment, and told the doctor; “Every time I see Catherine, it’s like something different has happened to her.”

“At this point, my face looked strangely twisted and I couldn’t get my eyelids open. After my friend said this, the neurologist said; “I think I know what’s wrong with you.” He set about arranging an appointment with his colleague who he thought could diagnose me.

“I was sent home from Kings’ to wait for the appointment and got much worse-I was lying about at home every day for weeks on end. A friend called to check on me and I couldn’t speak to him. I knew what I wanted to say but my tongue felt massively swollen and I couldn’t get the words out.

“I called the neurologist in the hope that he would hear how bad I was, and be able to speed up my appointment with his colleague.

“As luck would have it, he answered the phone when I called and when he heard how bad I sounded, he warned me that my throat could close up and if I felt like it was going to, I should dial 999.

“Luckily I was living with both my children, and my daughter drove me straight to hospital where my doctor had arranged a bed for me within two hours.

“I had a series of tests for Myasthenia Gravis, but it wasn’t showing in my blood. Something was telling them what was wrong, but it wasn’t showing up.

“After more tests ranging from sticking needles in my face, to actually stopping my heart for a few moments, it was finally decided that I had myasthenia gravis three and a half years after my symptoms began.

“Once the diagnosis was made, I felt much better. I was relieved that after so much stress, I finally knew what was wrong.

“I was in Kings’ for a month – and during that time I agreed to be a case study for the student doctors at the hospital. I saw maybe 30 students over the first few days who looked at me and asked questions. Some of them knew immediately what was wrong with me and they were only first year students, which I found amazing. I wish they’d been my doctors!

“I was let out of Kings’ but still sick. They put me on large doses of steroids for five years, and in that time I went from eight and a half stone to 12 stone. I was gradually weaned off them and now I’m on azathioprine. Apparently it virtually wipes out the immune system, so whatever it is in my blood that stops my muscles from working, is stopped by the drug.”

“The side effects of steroids have given me weak bones, and being a horse rider, I have to be really careful as I also have the start of osteoporosis.

“Today life is good. I am such an avid horse rider, that it was a huge worry for me over the years whether I would be able to ride again. It took a long time, several years, but now I ride two horses four days a week. My daughter gets a bit cross and wants me to cut back a bit, but the horses keep me going and give me something to look forward to. They’ve been my saviour.

“Due to the fatigue I still have, I have to really motivate myself to do lots of things each day.  I have days where I feel knocked out and weak but I try and make the most of my life, and I feel very grateful that these days, I’m back on track. My mum passed away last year, as did a close friend, and I know how important it is to make the most of what you have in life.

“Knowing that Muscular Dystrophy UK exists for people like me with myasthenia gravis, and other muscle-wasting conditions is so important. It provides a really vital lifeline, and one I called upon when I needed access to disability allowance. Living with myasthenia gravis doesn’t have to be a life sentence, as long as you have the right support around you.”

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