Abby, I think I've asked this before but have you looked at your childhood photos? Have you taken photos of yourself now? Keep the lighting, angle and distance from your face the same each time. I know you say that you don't have ptosis but are you sure? I thought ptosis was my normal growing up so I didn't notice it, not that I knew what ptosis even was until 2000.
What about asking your family members if you could take pics of them or if they could do it and forward them on to you? Ask for head shots. Do you have photoshop or any other software that could isolate the eyes and eyebrows?
I wish I could upload a pdf I have about CMS but it's too large.
Like Alice said, you can have CMS, MG or CMS and MG. They have not come close to uncovering all of the CMS's because they can be completely missed! And there are dominant CMS's with a lack of acetylcholine too, so it's possible your family has a dominant gene.
So since you're questioning things . . . are you sure it's a lack of acetylcholine and not too much of it?
Did your doctors look for a R-CMAP? It's where there's an extra muscle potential on an EMG. Some doctors might think it's feedback or not know what it is.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2924514/
I think that you should consider going to Mayo Rochester or UC Davis. They are the only ones who can tell you for sure. They will usually only see patients who have a positive SFEMG, which you do have.
Giving someone who does have a CMS Imuran would obviously be the wrong thing to do!
I would want to know for sure and I did want to know for sure! I do have antibodies but that does not rule out the possibility of my having CMS and MG.
I don't have anything brilliant to say other than it's obvious that you need to know the absolute truth. Who doesn't want that? You may never get it but if you don't at least try to, I'm pretty sure it will vex you.
I hope you do figure all of this out.
Annie
http://www.congenitalmyasthenicsyndr...dromes2004.pdf