Newly Joined
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Join Date: Jan 2021
Location: reside in Kyneton, Victoria, Australia
Posts: 4
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Newly Joined
Join Date: Jan 2021
Location: reside in Kyneton, Victoria, Australia
Posts: 4
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I have been on this site for some months but this is my first response to a request for advice - I first experienced double vision and drooping eyelids in August, 2020. I attended a specialist eye practicioner who was suspicious of my situation - he placed ice packs wrapped in tea towels on my eyes for 15 minutes - he had his assistant film it - when ice packs removed both eyes wide open - he prescribed Mestinon (weak dose) and told me if I had any further issues to attend thr Neurology Dept at a major hospital in the city (Melbourne, Aust). Within two days I underwent major loss of energy, so much so I thought I might be dying. After about three hours I came good and put off the Hospital. Two days later it happened again - I called an ambulance and went to the Royal Melbourne Hospital - the Emergency dept conducted the ice pack test again and filmed it for teaching purposes - I was admitted to Neurology and they spent four days testing me for everything - at the end of the four days they concluded the eye specialist was right though the confirming blood test result was not available for three weeks - apparently the only laboratory able to do the required test was in Brisbane - after three weeks the test confirmed the diagnosis - when I left the Hospital after four days I was on Mestinon and Prednisolone -they rung me a week later and asked if I was any better - I wasn't so they had me return to the Hospital for a further week when they did blood transfusions every days for the week - since then they have increased Mestinon to 420mg a day and Prednisolone to 50mg a day - the medication arrested all of the MG symptoms except it could't get my head up properly, about half way - its now May,2021 and rthey afe just beginning to reduce my prednisolone, now down to 20mg daily - my legs are in terrible pain but I am told that will improve as I'm getting off steroids - they are replacing the steroid with mycophenlate (2000 units per day) - apparently mycophenlate is used for surpression of the immune system with people undergoing organ transplant - I hope my story gives you an understanding of the process and what to expect - its no fun but my neurologist insists she will get me back to near normal within the next six months - I hope she is right but time will tell
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