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