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I was diagnosed with Myasthenia Gravis in September 1973 after not being diagnosed by doctors for 8 years! My first symptoms were double vision in 1965, then I went into a coma after a surgery in 1968 and couldn’t be revived for sometime – both of these happenings were red flags that were missed or ignored by doctors until in 1973 when I went to a newly arrived Neurologist in Canberra who diagnosed me in one minute! He told me my face gave it away: the droopy eyes and the ‘Myasthenic Mask’ he told me. I had also been having problems with walking; I mostly fell down! I couldn’t swallow food and I dropped things as I couldn’t hold onto them. When I had my 3rd baby in Feb. 1969 I knew there was something wrong as I couldn’t hold him back from being born he just ‘shot out’ of me! Luckily the Mid-wife caught him! As my GP couldn’t get to the birth in time he rang and told them to get me to pant and to hold on – I couldn’t I was just so weak. My GP was also worried about me but he didn’t know what I had, so he sent me to a range of doctors over the next several years until one doctor told me that my problem was all in my head and he also called me a ‘neurotic housewife’ and sent me to a shrink for a year! But I did not improve, I just got weaker and weaker until my body would go numb especially at night in bed and I could just not move a muscle and I couldn’t even open my eyes. When it finally came out of it I rang my GP and he said it sounds very serious and sent me finally to see the Neurologist who diagnosed me in one minute flat. Then I was hospitalized for two week and tests were done on me. I had a Tensilon injection and I immediately sat up in bed and I could actually breathe properly, my eyes popped open and I felt strong again. It lasted a whole minute before I was flat on my back again and hardly able to breathe, but my Neurologist and his Resident high-fived each other! You have definitely got Myasthenia Gravis the doctor told me proudly, now the hard works begins. I was started on Mestinon 6o mg 8 times a day and night [as Mestinon Timespan tablets had not been available back in 1973] I was also put onto Moduretic to retain potassium & to prevent leg cramps. All went well until 1975 when I was back to where I was before I was diagnosed. I then had a Thymectomy in July 1975. I was in ICU on a Ventilator, but I died. Thankfully I was revived, but it took a long time before I got to be able to walk properly and to be able to care for my 3 young children my home and my husband. I have had 6 Myasthenic Crises over the decades and all of them have landed me in ICU. I am now a widow [my husband Trevor, died in 2019] and live alone apart from my cat, Toby. Due to Covid lock downs here in Canberra and other parts of Australia my eldest daughter cannot come and visit me or take me shopping as she used to as she doesn’t live in Canberra and is not allowed to cross the border. I have new Neurologist now as my first one retired [I like to say as I wore him out!] He has told me not to have AZ vaccine for Covid as it contraindicated for Myasthenia Gravis and to wait for Novavax Vaccine to be approved for use in Australia, so it won’t be available here until November at the earliest. So it’s a waiting game for me, but I wear a mask when I go shopping and keep my distance from others and I don’t go anywhere that’s crowded. I use a walking stick to get around and occasionally a wheelie-walker, but I can walk unaided, but not if it’s too far or too steep or there are steps.
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