NeuroTalk Support Groups - My photos - does this look like MG?

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- - My photos - does this look like MG? (https://www.neurotalk.org/myasthenia-gravis/191984-photos-look-mg.html)

Quote:

Originally Posted by bny806 (Post 1003474)

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 remember seeing on one of the MG websites that triple furrow tongue was one of the symptoms of tongue weakness associated with MG.

kathie

Thank you all for your replies! I know it must be hard to tell from a photo when you have never seen me before but thank you all for taking the time to reply and comment. As I said to Anacrusis, its a bit like going to the dentist - people might not necessarily notice or think it looks bad but when you can feel your mouth not moving as it should or your eye drooping it feels so much worse than maybe it looks?! You are so right Brooketrout - it does make me self-conscious and I feel like people are staring or just looking at my mouth when I try to talk and only one side moves! I then feel sorry for them as they don't know where to look!! Unfortunately, I have no medication so I look like this (to one degree or another) everyday :(

Thank you Kathie, bny806 and suev for the comments about tongue scalloping - over the years I have notice furrows/scalloping down the edges of my tongue....I thought maybe my tongue was swelling periodically for some reason or maybe just too big for my mouth!! haha. So your comments are really interesting, thank you all!

Gr8ful - thank you for your link - that is very interesting given that I have twice been told symptoms should affect both sides and not just one. Surely if one sided is possible for eye symptoms it is completely possible for any symptom to be one sided?!

Matilda - it baffles me WHY anyone would want to fake ptosis! What is wrong with these Dr's??? And, like you said, if you try to fake it - it is virtually impossible to recreated the symptoms exactly as you describe. I am pleased your medication is working and hope you continue to improve and you finally get the diagnosis and answers you need:hug:

Thanks again everyone :grouphug::grouphug:

Quote:

Originally Posted by Unsure81 (Post 1004070)

As I said to Anacrusis, its a bit like going to the dentist - people might not necessarily notice or think it looks bad but when you can feel your mouth not moving as it should or your eye drooping it feels so much worse than maybe it looks?!

Dear Unsure!

Today I went to my own doctor (after 6 months of feeling very little weakness at all) about an issue unrelated to MG. Well, inspired by you I also took along a photo of my own milder ptosis and other evidence of rapidly deteriorating weakness after heat exposure on holiday. The doctor thought the symptoms I had were serious, and when I took my own picture my ptotic eye actually felt better than it looked.

I hope you do get your diagnosis and the best treatment soon :hug:

Anacrusis

I don't know how you can fake ptosis. It would be hard to do.