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-   -   New here need support. (https://www.neurotalk.org/myasthenia-gravis/256458-support.html)

Davidgonza 04-10-2021 10:24 PM

Hi. My symptoms started with droopy eyes and double vision after a minor forehead concussion playing with daughter when she was 2 years old. That was 17 years ago. At the time I visited several specialist and sud-specialist with no diagnosis (almost 2 years). After educating myself I asked a neurologist to prescribe Pyridostigmine (Mestinon) to see how my eyes would react. After couple of days my eyes were going back to almost normal. Since then I started the same medication and prednisone to control symptoms under MG experienced Neurologist. It started ocular MG and then became generalized after 4 years. I never tested positive for musk antibodies. I was diagnosed based on the symptoms; droopy eyes, double vision, difficulty swallowing, weakness throughout my whole body, shortness of breath, falling,... All those symptoms and severity would come and go depending level of physical and emotional stress, There are more things that I can say but will leave that for later as needed. Good luck!

Michael147 05-07-2021 10:54 PM

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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