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Old 07-28-2013, 05:15 AM
Matilda Matilda is offline
Junior Member
 
Join Date: Oct 2012
Posts: 11
10 yr Member
Matilda Matilda is offline
Junior Member
 
Join Date: Oct 2012
Posts: 11
10 yr Member
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Looks like mine. I also made video's of it. (effect of ice-pack=up, effect of holding a towel soaked in hot water against my eyes=down, effect of looking up for prolonged time=down).

The previous specialist I went to see (an MG/LEMS expert) told me it looked like I was faking it (after my EMG/ anti body test came back negative). He also said in myasthenia eye lid droop is always asymmetrical, mine is mostly symmetrical. Funny thing because I’ve read people being dismissed in the exact opposite situation, being asymmetrical and specialist convinced it should be symmetrical.

I repeatedly tried really, really hard to 'fake it' on a good moment, straight out of bed on a good day. Because I thought maybe he was right to think I was crazy. I couldn't replicate the 'real thing' on a good moment. Of course I am able to let my eyelids drop, that's what their there for. But when I try to fake it my lower eyelid comes up as well. Also the fold in my upper eye lid drops when I let the eyelid drop on a good moment. When I am having real ptosis the fold stays up like yours does. I can image that people who are a little older can fake it better because of looser skin/muscles/connective tissue. But I am quite tight skinned.

I also have a very strange thing: when I have a spontaneous bout of ptosis and I squeeze my eyes really tight for a few seconds the eyelids go up instead of down (after half a minute their sagging again). Something similar has been described in LEMS (paradoxal eye lid lift after prolonged upward gaze). I have a 'working diagnosis' of LEMS at the moment and react to a combination of DAP/mestinon very well.

Is there anyone else who's ptosis resolves a bit after a good tight squeeze?
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"Thanks for this!" says:
Unsure81 (08-01-2013)