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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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Hi everyone - I hope that you are ok?
Can anyone help me with this, as you know I am struggling a little and the Mestinon Magic wore off after 3-4 short months for me! the 90mg dose seemed to make me worse and the 60mg isn't enough but I tried to stick with it. Last week, I decided it was pointless to take something which doesn't really help and so I stopped it. I have to say, I didn't notice a great difference in my facial droop though my legs seemed weaker. After 5 days off them, I took one and it dramatically helped my facial weakness, it didn't completely resolve it but the heaviness in my cheeks went and I only had a slight drop on my top lip, movement when talking was freer and easier.......this lasted for just under 2hours before everything returned! It is strange as this happened after I came off Mestinon for my SFEMG - before I came off it I didn't think it was helping but the first one I took after the test was like the miracle it was when I started taking it - again the effects soon wore off and after a day or 2 In wasn't noticing much improvement at all again. Can anyone help me with this or explain what this means....or am I just completely losing it!!!! lol!! Thank you! Eve.x |
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