Hi everyone - following on from my last post and my discussion with Anacrusis who is helping me try to self-diagnose myself (haha) through the pictures I showed my Neuro's - I have decided to swallow my pride and post them here for your opinions! I know that I am probably on the mild end if I do have MG but what do you all think??

For the record after seeing these Neuro #1 said definitely not MG and Neuro #2 said highly suggestive if MG so the jury's out while I wait for nerve/muscle tests!



The first picture is at 8am after 8hrs sleep, the second is at 3pm

And this is before and after a 2min ice pack?

Thanks everyone - I'm very grateful for you time and comments.x

It looks like it. Mine is more severe, but I am sure there are levels of severity.

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?

Yours looks pretty mild. My ptosis was asymetrical most days and much worse. I had to tape my eyes open at times to drive home from work. My neuro was not impressed since the Achr antibody test was neg. He sent me to an opthomologist for evaluation and he was the one who insisted on a Tensilon test. My repetative Emg was also neg but since I had already started on mestinon the NM specialist was still sure about my diagnosis. Try to get to an opthomologist or neuro-opthomologist.
Good luck
Sandy

My hubby reminds me to take a pill by saying...
Your face is melting - must be time for a pill.

Your face has the same sort of melting look as mine.

Try looking at your tongue. My neuro always looks at my tongue for 'scalloping' and can tell a lot about degree of weakness, whether it bilateral of not, etc.

Stick your tongue out and look at the edges (or sides) where your tongue meets your molars. The more defined and deeper the scalloping (waves or ridges), the weaker your tongue. A normal persons tongue doesn't groove on the sides. But weak tongues collapse and press up against the molars....creating the scallops.

I can't even see out..........

Unsure, There was a link posted by HeatIntolerant that described some statistics of one sided vs two sided symptoms of ptosis in an MG study. The link is here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772854/

About 50% of the people in the study had one sided ptosis and about 20% had two sided ptosis. MG can produce either symptom.

I also have the face melting thing... in fact, we were outside yesterday with some friends.. and I thought I was tolerating the heat fairly well compared to usual (just had ivig).. and then I went inside glanced at the mirror and thought "ahhhh"... our guests have got to be terrified of my face - it looks so different than usual after I've been in the heat - and that's not a good thing either!!

I have a triple furrowed tongue (it goes down on both side and the middle). Anyone else have this? I have several family members who have this too - they also have significant ptosis, but don't really notice any disabling weakness.

I admire you for posting the pictures, I know that took a lot of courage. Just my left eye is droopy and I feel like people are always staring, but the medication I'm on now does help it somewhat. I hope you get some answers soon!