I don't think I have the eyelid problem except for the droop.
I had double vision for about one year. It is now gone. PRAISE THE LORD!!! I started on Mestinon then Mestinon+Steroids then Mestinon+Imuran (1 year). The Imuran really made me sick. I lost 35 pounds. During that year I was also on IVIG about every 2 months. As Abby says mine helped about every other time. I am currently on Mestinon+Cellcept+Steroids and MAYBE IVIG if needed. I feel better than I have felt in a year.
Keep in mind what works for one person might not work for another. I call it a Neuro's "Witch Brew". I take my wife along to all my appts so I don't forget anything. We try to tell him about all my problems.
Hang in there, this crazy thing takes time to find the right treatment.
Mike
Quote:
Originally Posted by bny806
Pingpongman- That is exactly how my face/smile is! We were at my work party last night and I felt like people were going to think I was mad, I just couldn't smile or make the "laughing face"!
Does your fatigue vary from day to day- I know there are some days for me where I can laugh/smile for a bit and be ok, and other days where I can't even make the expression at all..
Also, are eyelids NOT closing all the way at night a symptom of MG?? When this all started my first symptom I noticed was waking up with red irritated dry eyes, I noticed my vision seemed double at times, and at the same time I noticed the shape of my eyelids had just changed.. I thought it was odd, but chalked it up to being tired with a newborn and hitting hitting 31 years old!  Anyhow, turns out my eyelids aren't closing all the way at night. is that normal for MG??
As far as labs go, you say there was a lab for binding? is that an antibody test as well? I have never mounted antibodies (at least in all the labs I have had in the past 10 years, all my antibodies are negative, despite having had the illness or vaccine) So i don't know how accurate antibody testing is for me.. is the Musk test an antibody? are there any non antibody tests for MG? Thanks again! Hope all is well! (btw, what is your treatment, just mestion? or did you do IVIG?) Thanks! |