Hi sherri,
There is nothing normal about about having MG. It is called the snowflake disease for a reason. I had symptoms of MG for over 35 years before I had any ocular involvement. Others online, being treated aggressively for MG, have no ocular involvement. The emphasis on the eyes may be historical and self perpetuating--if those findings have to be there, then if they aren't there, it is not MG or a higher standard of proof is required.

The higher standard of proof is usually positive blood studies or positive SFEMG or characteristic EMG findings. Be sure to read the section on EMGs before your trip to Chapel Hill. Both my father and I were inadequately prepared for having the test there, done in a cold room, early in the morning, after coffee if not Mestinon. b.

Ocular involvement was my first symptom. Many of the members on here present ptosis (drooping of the eye lid). Although my mother claimed that she could see it on me i couldnt even notice it on myself! If i could say how i feel on the matter it would be i presented no ptosis. I also didn't fit the criteria for "double vision" which many people on here also have. The problem i experienced with my eyes was the tracking of them. If i were to look across the street i would sort of get dizzy it felt like my eyes didnt track together?

Thanks for the replies. I feel so bad for my poor daughter. She complained about an unusual muscle weakness and fatigue before I took her seriously. It took having her collapse while rehearsing in NYC for the Macy Parade. Since then her symptoms cannot be overlooked. She can only dance a few minutes before she has to rest or her legs will collapse. We don't really want this diagnosis but we are desperate to figure out what's going on and what we can do to make it better. She has had a "normal" EMG but she needs the "rapid stimulation...." and none of her bloodwork has showed anything but I'm unsure of what's been tested. I don't understand why a regular neurologist is not more familiar with this disease. Praying for a solution....

My eyes are the last thing to go. They were the presenting symptoms that drove me in to see a physician, but I had had generalized symptoms for years. I never thought when my eyes went of my leg muscles. It is such a comprehensive yet elusive malfunction.

I'm sorry about your daughter. I have MG, but my sons have a serious kidney disease, so I know what it does to a mother's heart to deal with the illness of her offspring. She would gladly take the illness as her own if it would mean the child would be well again.

My right eye will drop when I'm really tired! And when my MG is at its worst, I have double vision. But no not everyone has eye problems, MG symptoms are all different.

My left eye was my very first symtom; with a heavy feeling in the eyelid and feeling slightly cross-eyed. Then my symptoms in the rest of my face progressed, similar to your daughter's: I couldn't smile completely, slurred speech, weak and nasal voice from my throat muscles and palate falling. It wasn't until months later when I was having generalized MG that my eyelid became very noticably droopy and later still I developed double vision. My symptoms can vary depending...on what, I can't tell. Sometimes one group of muscles is affected much more than the others.

I'm sorry for you and your daughter to be going this at such a young age.