gr8ful, Let us know how you do after the neurologist appointment. My thoughts are with you through this difficult time,
kathie

I will ad my 2 cents to this. I was diagnosed about 7 or 8 mos ago, after having syptoms for appx 3 years. We probably all wondered the same as you.I have read several places, that after about 3 or 4 years, your symptoms are about as bad as they usually get. Howver, as I have read on this group, that is not always the case. I was doing just great on 3 Mestinon a day, until I again developed the old droppy eye. So was allowed to increase dose to 4 times a day, still some problems. but tolerable, (using a little clear surgical tape to help hold it up if needed). So I agree, a day to day thing, you won't know for sure where its going. Again, I will say, could be worse, it could have been something terminal. Dont be scared, they have lots of medicine for this, and can live with it.
FREDH

Thanks to all for the kind words and info. I spent quite a bit of time reading this forum. There sure is a wide range of symptoms for MG. I'm trying to figure out where I might fit in but that doesn't seem possible....and yet I try. It's not helping my stress level but I suppose accepting I have a serious disease is a process I have to go through in my own way. Another new 'adventure'.

I haven't told anyone besides my wife about my MG. Co-workers saw my ptosis but I've shrugged it off. Does anyone have any advise on this? Work, friends, family, once you tell someone, you can't ever un-tell them.

I have not told anyone at work. I get strange look sometimes when my eye do weird things, like get stuck half way open or wander in their own direction, or trip all the time. I do not work in a place that is nice and accepting. My boss expect very high performance and if they thought that I could not give it my all, or thought I had a serious disease that might leave me disabled, it would show in my performance appraisals and raises.

I still have a teenage daughter to get through high school and college, so I keep it a secret at work. I have not told my daughter or the rest of my family yet. I am seronegative and I do not feel I can tell them until I have a definitive diagnosis yet.

Once I do get a definite diagnosis (SFEMG scheduled for the end of the month) I plan on getting a medical alert bracelet, so I will have to prepare a response by then.

Sorry I can not be of more guidance. I struggle with it myself. I think I will just tell them I have an auto-immune neuromuscular disease and leave it at that. If and when the time comes that it severely affect my attendance at work or I need to reduce work hours etc.. then I will tell more. Otherwise, I hope to retire without anyone at work ever knowing.

kathie

I have not told my boss that I have MG either. It is really not any of her business as long as I am able to do my job. Even though it is illegal for them to discriminate, I think that it would certainly happen on some level. If I get to the point that I have to have accommodations to continue working, then I will have to have a discussion with my administrators.

I have noticed students staring at my eyes on occasion. I also sometimes lose my voice while lecturing. I just give them a break and try again. I have one coworker that continues to comment on my gait. He asks me why I am limping. It is none of his business, so I just say, "I fell off of too many horses in my life." I don't even notice when my gait is abnormal unless my feet start to catch or drag, so it is really annoying that he tries to point out my problems. I avoid him whenever possible.

southblues;

If the time ever comes when you have to talk to your administrators, make sure you know your rights under the Family and Medical Leave Act.
http://www.dol.gov/whd/fmla/

Your doctors will be the ones you want to talk to before your administrators.

scrubbs

Well, I like my doctor. She told me I would be OK but she didn't know what the process of me being OK would entail. My 1st dose of mestinon fixed the ptosis. There's lots of testing scheduled. It's time to hunker down and deal with a chronic illness. I can do that. I don't want to, but I will.

I'm not sure that's my 'final answer' on acceptance. My thoughts are all over the place.

It sounds like so far, you aren't experiencing too much impairment, which is great! Some people I've met online don't get too bad. Others of us, like myself, are in bed a lot and can't work anymore. Like others said, there is no way to predict. I think judging by where you are now, you are in good shape and hopefully things will stay that way.

I was already really sick when I got diagnosed. I got sicker from there. Even so, I can still find a lot to be grateful for. In this age of the internet, we can have a decent quality of life even being bedridden. It can be a daily struggle to be inspired to be grateful, but I have the best friends I've ever had in my life since I became ill. I'm also closer to God and have a new, wonderful church family. I learned what is important and what isn't. I went from being a workaholic to someone who is at a standstill, but I'm much more present for my family.