For now, most of my symptoms are at bay, being controlled with 80mg of pred, and 2000 of cellcept.

yet my eye NEVER gets better. And i hate it. Im getting down again about all this, and its sort of pissing me off.

I just want to know if any of you have had your droopy eyelid 'go' away or if it always stays. I assume someday itll go away. But just self concious.

Well, you're young, so just tell the ladies that they are SOOOO fine that you are constantly having to "wink" at them!

Seriously, though, the people who love you aren't going to care about your eyelid drooping. And you will find as you go through life that the people who are willing to look past that are the ones that you want in your life, because they are the ones who know that what is inside is what matters.

I can't give you any reassurance about the droopy eyelid, as I am really new to this whole thing, but I hope that this helps!

I think that chances are it will go away someday, or at least that the days with droopy eyelid will get fewer as your other symptoms improve. This has happened for me. Those droopy eyelids are no fun.

Tyson,
I feel for you on this one. My eye bothered me terribly too and took a long time to get better. I started on 40 mg of pred and it made no difference in my eye at all but Once he upped it to 60 mg it went away and only comes back for a few minutes here and there when I am really tired. I am down to 10 mg and so far it is still doing good. It made me terribly self conscience and I am in my 40's so I have no doubt that is incredibly hard for a teenager. Do you have times when it gets better and then worse again or is it constantly the same and has never changed at all? Since you're on 80 mg of pred that is higher than I was but I know everyone is different. Have you talked to your neuro about it? I know some people have been able to get rid of the droopy lid with just Mestinon, I wasn't one of them. It took high doses of pred to do it. I can tell you once I started at 60 mg the droopiness was gone within 48 hours. I was soooo happy!!! I hope in time they can find a dose that will work for you.
Kendra

Tyson,
My husband is in his 40's & his droopy lids really bother him too. He compensated by buying some really cool shades that he can wear indoors. They have a kind of mirrored outside so people looking at him can't really see his eyes that well (he also has one eye that frequently is looking way over to the side when the other is straight ahead). The shading is very light tho so it doesn't interfere with his vision. He wears really dark sunglasses when he's outside. Maybe you could try this and all the girls will just think you're really mysterious!!

My eye improved after my thymectomy. The droopiness came and went. The big improvement came when I started taking CellCept, 1500 mg per day. Now you can barely tell it droops.