I really appreciate hearing your experiences. In fact, reading about someone's experiences is what prompted me to start looking into MG in the first place. I have been at a loss and read someone's posting about an episode she had had. (I think it was on a different website, but maybe here - I got it through Google.) It was like reading an excerpt from my own journal. I had never heard anyone describe so perfectly what I feel as I end up in a heap on the floor. So I started doing some research. There are definitely aspects of my situation that fit, but some that don't, hence my confusion. I asked my dr. for the test and he ran Quest Diagnostics MG panel. I'm not really sure all the tests included in that - I had only asked for ACHR. I've kind of decided that if it comes back negative, I will not pursue this direction further. But maybe I will. I'm getting pretty desperate.

My story is extremely long and I'm not really sure what's the most relevant, at this point, so I'll throw it all out there. It all started 20 years ago in my teens. At the time, I presented with pretty typical autoimmune symptoms including rashes, pain, fatigue, photosensitivity and the like. But it was near impossible to narrow it down. And I didn't know anything about the medical field way back then. After a few years of this, things calmed down and I returned to a more or less normal life.

A few years later I was struck with intense GI pain to the point that I couldn't eat for about a year. I lost a lot of weight (and being so young, I didn't have much to lose), but diagnosis remained elusive. Again, symptoms seemed to resolve on their own and I returned to a more normal life.

After a couple of more years, when I was in my early 20s, I began having confusional episodes, which were diagnosed as TIAs resulting from antiphospholipid syndrome. They resolved with coumadin therapy and I returned to a more stable life. But normalcy was short-lived and I was soon passing out randomly - at work, on the street, and in the pool during my water aerobics classes. The problem was diagnosed as second degree heart block, neurocardiogenic syncope, and postural orthostatic tachycardia syndrome. My symptoms improved with the implantation of a pacemaker and meds.

Pacemaker settings were adjusted inappropriately a few times resulting in recurrence of the fainting, but otherwise I had a few years of relatively stable health.

Next I experienced severe abdominal pain. Again, no diagnosis was confirmed, but the doctor presumed endometriosis and the pain eventually subsided with treatment.

Then, in my late 20s, I broke my pelvis running. Yes, running, not falling. I was diagnosed with osteopenia.

A couple of years later, I experienced a series of GI bleeds, leading to the discovery of colon polyps which were apparently not responsible for the bleeds, but definitely a fortuitous find. The GI bleeds became life threatening and I was transfused. Eventually they too resolved on their own.

And then in January of this year, I began having serious vision problems - lots of double vision. I went to get my eyes checked and was told I have perfect vision, but that doesn't explain why I feel like I can't see. It's almost like my eyes get tired of focusing and so they stop working together. When I get tired it's so much worse. And by the end of the day, I can't read anything without a lot of effort.

In May, I started passing out again. But the episodes are a bit different and do not necessarily involve loss of consciousness. Although I may briefly lose consciousness (it's hard to tell from my vantage point on the floor/ground), there is a significant period of time when I am fully aware of what is going on around me, but am unable to respond in any way. It takes everything I have sometimes just to keep breathing. And if I get turned on my back during one of these episodes, I can't breathe at all. It's like I don't have the strength to expand my lungs against the pull of gravity.

On Sunday, I had one of these episodes. I was sitting in a church meeting and became extremely fatigued. I leaned forward, resting my head on my arms, but they were tired too. I breathed deeply (if this is an NCS or POTS episode then such efforts could help), but I quickly realized that I needed to leave. I left the room, walked about 10 steps to an adjoining room and collapsed on the floor. I was so fatigued I couldn't respond. I couldn't move my arms or even open my eyes. I was just lying there. I could hear other people coming in and trying to decide what to do with me and, being the control freak that I am, I definitely wanted to intervene, but could do nothing. At one point they turned me on my back and my breathing became virtually impossible. I could tell I was going to be in serious trouble if I didn't get onto my side. Eventually I was able to use my body weight as leverage to roll back over. After about an hour of lying on the floor, I was able to open my eyes. Fifteen minutes later, I was able to sit up with support. And within another 10 mins, I was able to be transferred to a car and ride back to my apartment, with very short periods of walking. My legs were shaking as if I had just completed a major workout. And I was so exhausted, all I wanted to do was sleep. Unfortunately, sleep did not come. But again I was too exhausted to move for a couple of hours.

In general, I have a lot of weakness in my hands and arms, resulting in pretty severe tremors after prolonged use (and sometimes after really short use, depending on the day). I have trouble chewing chewy things and have to take breaks. My head is often too heavy to hold up by itself so I lean it on the back of my chair or prop my arm on something and lean my head on it.

So, that's my story, in a very long nutshell. I'm getting a little desperate because I can't keep randomly losing functioning - it's dangerous for me, especially since I'm on coumadin - and I really want to get back to regular life. Not to mention the fact that I really can't afford all the ambulance and ER bills that inevitably result when I lose control in a public place. Plus, I really want to running (which I haven't been able to do safely for quite some time). I miss my life!

PS I just got back from Mayo clinic because it was assumed these problems were associated with my cardiac issues. Turns out they don't seem to be.