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Old 01-29-2021, 02:44 AM #1
Michael147 Michael147 is offline
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Location: reside in Kyneton, Victoria, Australia
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Michael147 Michael147 is offline
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Default My MG experience

I am 76 yrs of age and reside in regional Victoria, Australia, with my wife. I am a carer for my wife who suffers from Transverse Myelitis, an autoimmune condition, which manifestered itself nine years ago. Last September, 2020, I was driving and noticed my eyesight was unclear. I went to a local optometrist who referred me to to an eye specialist. He sent me away for an MRI which eliminated tumor and /or annurism - he then concluded I had an ineffective muscle behind the eye causing double vision. He felt time could correct the situation and elected to monitor the situation. I went home and several days later first one eyelid closed then the other. I immediately returned to him. He immediately reversed his earlier diagnosis. He had his assistant obtain ice packs and placed them on both closed eyelids. He had his assistant video the procedure. After ten minutes the ice packs were removed and both eyes were wide open. He advised me he thought I may be suffering from MG. He told me this was out of his field as he thought it likely the effect was throughout the body. He advised me if I did not improve I should present at a Neurology Dept of a major Melbourne Hospital. Several days later I experienced a huge loss of energy. I was chair bound for several hours. I got over it but it happened again two days after that. I called an ambulance and was taken to the Casualty at the Royal Melbourne Hosp. I told them about the earlier diagnosis. They called in a doctor from Neurology who conducted tests for consideration as to admission. Other doctors from Casualty showed surprising interest. When the Neurology doctor went to consult with his peers, the casualty doctors asked if they could conducted the ice pack test and film it for teaching purposes which they did. I was later admitted to Neurology where I stayed for in depth examination. The eye surgeon originally consulted organized a blood sample to cofirm his diagnosis. It was not until later that both he and I found out it would take three weeks for that to be done (it had to go a a specialist laboratory in Queensland). Meantime the RMH doctors concluded that it probably was MG. They relied upon physical examination, nerve/muscle stimulation (two separate one hour examinations - hell)various CT scans followed by a Petscan. They increased Mesticon from 20mg(eye specialist put me on) to 240mg and introduced prednisolone 15mg. I went home but struggled. A week later they contacted me and were unhappy with progress. I returned to the hospital for a further week when they conducted five blood transfusions over five days. When I left hospital eyes were wide open slight double vison but overcome several days later but head only half up due to weak neck muscles. Mesticon increased to 360mg and prednisolone up to 40mg a day. Slow progress since but only about 30% strength. Now experiencing severe leg muscle and tendon discomfort and cramping in the hands. Mesticon now to 420mg time span capsules and prednisolone to 50mg. Just starting this so I will see how it goes but the leg situation is very concerning and potentially life changing. Sorry for being so long winded but I thought my experience could be useful for newly diagnosed.
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Old 01-29-2021, 09:47 AM #2
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Welcome Michael147. Hope you find answers.
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Old 01-30-2021, 08:04 AM #3
Michael147 Michael147 is offline
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Michael147 Michael147 is offline
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Thank you Kitt - I have already benefitted from this site - I discovered longspan Mesticon which I was not aware of - I have already obtained it and started on them today - hopefully they will assist me to offset leg pain especially in the morning
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Old 01-30-2021, 12:07 PM #4
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Welcome, Michael147,

I'm sorry you've been diagnosed with MG. It sounds as if your leg problem might be related to the meds you've been taking, or at least that's how I'm reading your post. I hope you're able to investigate any drugs you're taking--find out what their possible side effects are and any other helpful information about them.

I hope that others will be along to help you in your search for answers.
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Old 02-02-2021, 01:19 AM #5
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Hello Michael,
Welcome to the NeuroTalk Support Groups.

I hope you're able to find both support and information here to help you both.

take care.
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