The weird Symptoms: I'm putting this out there b/c I'm wondering if any one else can relate to this kind of thing.

• At age 16 was sitting in a dark classroom in AP biology class and I was just taking notes like I normally did. My head and eyes and the line between the brain and eyes felt like someone had squeezed and poked pulled all at the same time. I say the line between my brain and the eyes b/c that is what it felt like (I know now it was probably the optic nerve) but back then all I knew is that line was on fire and the entire length felt like it was in a vice being crushed. Blinking and rubbing and getting in absolute (or as close as I could come by putting my palms over my eyes) darkness did nothing to relieve the severe pain. In addition to the pain i saw “light” even though the room I knew was dark – we were looking at transparencies on the overhead and I was on the front row but it wasn’t the transparency machine light I saw it was more like the flash bulb of a camera and it faded and blinked on and off in both eyes and it happened weather my eyes were closed or open (from what I remember). When the “light” cleared I had double and blurry vision and it got so bad that my teacher had to provide me with the notes from her lectures from that point on (it was the beginning of the second semester of the college course of AP biology) b/c even she saw that I couldn’t see the board though I was only 3 feet, no i was less than 3 feet from it! That was the first experience with what ever this thing is. And it still scares me to think about it b/c it was the start of the eye problems and I have had several other “attacks” like that during college. I was a junior in HS when this happened. I had no formal accommodations in high school and was not in special education (just the opposite I was in advanced placement classes – but ALL my teachers eventually made accommodations for me like giving me a copy of THEIR lecture notes or having a notetaker for me b/c they could see my grades drop suddenly after this first attack. I went from making A’s to making C’s and even F’s on somethings. It didn’t take them long to figure out that something had changed, we had no idea what, but something had definitely changed! Usually by the first F on a quiz or major test they were coming back to me and saying what happened b/c I NEVER did that before this attack. But from that day on my life changed b/c my vision has NEVER been entirely right since that time and each attack seems to have some sort of cumulative effect on degrading my ability to control my eyes and see w/o doubling. I am constantly now straining my eyes to not see double after the eye surgery and then there are times when I just can’t compensate for it any more and I get unrelenting double vision and almost total loss of muscular control of my eyes.

• Sudden and painful cramping at night in my legs (spasms?) with no physical activity strenuous the previous day that could explain it. Ultimately relieved by letting the cramp run its course with gentle stretching afterwards. Have had this for about 2 or 3 years.

• Tingling sensation down my arms (even the arm on top if laying on side when curled up and all comfy and asleep. Intermittent – started about 3 months ago)

• Eyes closing involuntarily (dark? Makes it better)

• Extreme sensitivity to heat aprox. 80 degrees and above (creates almost instant muscle weakness even if previously strong – was a HUGE problem where I worked in food service when I was in the kitchen environments of commercial foodservice next to major heat sources.)

• Double vision (transient)

• Muscle weakness (transient – a day to a couple of days) coupled with severe balance issues during attacks and general unsteadiness.

• Balance issues (transient see above)

• I love the cold to a degree. When I’m having an attack. I used to go into the walk in cooler at work in food service in a short sleeve shirt and roll up my pants legs to get cool and stay there for like 30 min (or as long as I could beg my way from management to allow me to stay) right in between two powerful fans that kept the cooler just above freezing. I would remain stronger and till I warmed back up. Then I’d “beg” for another round about 45 min to 2 hours later depending on if I was perspiring or not when I went into the cooler.

• When on the Mestinon I always had some muscle weakness. But then, and recently more frequently, I would also have what I called “breakthroughs” where the weakness was REALLY BAD and it was pretty much debilitating for that day(s) of the “breakthrough” weakness. The flare ups would be unexpected and sometimes even when things were going well they would happen. I have been having these intermittent flare ups since age 16 (since the day that I had my first eye pain coupled with double blurry vision). The attacks continued while being treated with the mestinon. (note mestinon is a drug therapy for Myasthenia Gravis a disease that was finally definitively ruled OUT 2 days ago but the sx were similar at the time to MG and had not progressed to where they are now and thus i was placed on the mestinon).