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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-30-2009, 06:49 PM | #1 | |||
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hello i ve had double vision first then generlal weakness but before any thing else i use to get my eyes feeling really heavy and i would fight all the time to keep them open even when i had a goodnights sleep it was the same
so now its worse i can wake up and still have that problem oh and the double vision is bad when that hapens mostly if i watch tv and on a buss as i use them now so im not sure if its MG or something else i told my Dr but he wasnt helpful alan |
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06-30-2009, 08:45 PM | #2 | |||
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Sounds like MG to me...What did your doc. suggest it might be?
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"Thanks for this!" says: | alan53 (07-01-2009) |
07-01-2009, 04:50 AM | #3 | ||
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Hi Alan,
nice to meet you. My eyelids get heavy and then sometimes I will then get unilateral or bilateral ptosis. I can even wake up with it. I can only describe it as like your eyebrows are having a race to see which one can reach your chin first! I find when its that bad the only thing to do is apply ice to the eyebrows, this works very quickly for me. I know Erin has said before that even a cool can of coca cola can do it. I can't help with the double vision, although I suffer with it myself normally towards the end of the day. I hope this helps Rach |
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"Thanks for this!" says: | alan53 (07-01-2009) |
07-01-2009, 06:36 AM | #4 | ||
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Hi Alan,
My main problems with the MG until recently have been my eyes. I had double vision continuously for about 8 months., and then I learnt I had MG, one of the biggest helps to me with the double vision is to either close one eye or patch one eye it doesn't make a difference which eye., but this will get rid of the double vision. Also I get the heaviness in the lid and as others said the ice or very cold helps that. I also get the general weakness., especially lately with the heat. I have been diagnosed with MG, and have been waiting to get into a MG specialist the end of August., so my GP has been taken care of any major issues., which fortunately have been none. I just know to close my eyes and rest them when I can., and when I become very tired I rest also. I know some say that the prednisone helped with the eyes., the prednisone's side effects for me were worse than the symptoms, so I do not take prednisone., and the mestinon I had a bad reaction too. Take care Nancy |
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"Thanks for this!" says: | alan53 (07-01-2009) |
07-01-2009, 09:38 AM | #5 | ||
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Hello Alan,
Yes, sounds like classic MG eye problem to me and it being the summer it is always worse. As I sit here and type this my eyes are barely open. As for the double vision I tilt my head to the side when reading, typing or watching TV. |
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"Thanks for this!" says: | alan53 (07-01-2009) |
07-01-2009, 11:10 AM | #6 | |||
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thanks for the advice my Dr didnt have any answers to that
and i just deal with it but do any of you nod off fall asleep when your eye lids close thats the bit i don't think is MG its like their becomming so heavy and i can feel them closing but i fear that i will then fall asleep and if i get up and do something its ok i'm going to try the ice pack or something cold on them see if that helps ive noticed that one eye lid doesnt open as much as it did that must be the ptosis |
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