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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Hi,
I'm on a real downer at the moment, I have gone down hill and have had ptosis since Friday that mestinon won't get rid of. On top of that the weakness throughout my body has continued. I've tried upping the mestinon to 90mg which opens my eye, but makes me feel ill, with the shakes etc. So it seems too much, although it does improve my weakness also. Ive noticed this morning that the eyelid with the ptosis is a different colour to the other one. It almost looks bruised, from the edge (where its above the tear duct) to the middle of my eyelid. I can't say for sure if this has happened before, Ive never noticed. Has anyone else had this? I'm still undiagnosed, my bloods all came back negative. However the Dr has asked me to return to Oxford for tests. He wants to re -do the tensilon and the ice pack test as he wants them done more formally than when I was in the local hospital. I have to be honest and say I feel at my wits end. I really don't know how I can continue to keep going on like this. I'm not contemplating doing anything stupid, to relieve my own suffering would cause unimaginable pain to my friends and family. But what do I actually have to look forward to in life? When its like this? I'm sorry Im having a tough time at the moment and I'm just throwing a pity party. Your all welcome to come and join in. Love Rach ![]() |
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