I want to tell my story just in case there's the smallest chance it might help someone else. I want to stress that this is only about what happened to me, and I don't mean to suggest that anyone here has a similar story.

I have seronegative MG. I was diagnosed by my third SFEMG (first two were inconclusive). Before my diagnosis, I spent a year and a half worrying I had something worse than MG, or that I would never be diagnosed--or worst of all (in my mind, at least!) that my symptoms would be dismissed as "all in my head."

A month or so ago I developed a new symptom: violent shaking. That's not on the MG list. I thought I was going hyperthyroid again, but my tests were fine. I went to the neuro. He examined me and asked me some questions, and suggested very gently that the shaking could be psychogenic. I was devastated. But when I left his office, I stopped shaking, and I haven't shaken since--it's been a couple of weeks. The change is dramatic.

Here's the next step. In addition to typical MG symptoms, I have other symptoms that have always baffled my neuro. The most serious one is episodes of collapsing--I just go limp for about half an hour. I do not know for sure whether this symptom has a physiological cause that we simply don't understand, or if it's psychogenic, as I now think the shaking was. I haven't collapsed since I left the neuro's office, but that might not mean much, since I've gone without collapsing before for longer than this. So it might come back. Or it might not. I'll have to wait and see.

I don't know for sure what's going on, but here's my best guess. The MG is there. The muscle fatigue and weakness are symptoms of MG. However, in addition to the MG symptoms, I have symptoms that are not caused by problems in my neuromuscular junctions--instead, they're psychogenic reactions to my perception of the MG symptoms. I'm not "faking it"--the reactions are real. But they're caused by what's going on in my mind, and not directly by what's going on in my body.

So it is looking like it's possible that I have a combination of symptoms: some are caused directly by the MG, and some are caused by my emotional reaction to the MG symptoms. When I feel the weakness in my body from the MG, that triggers other symptoms psychogenically.

That word "psychogenic" is a terrible word to hear--I, personally, burst into tears when my neuro said it. But it doesn't mean "not real," and it doesn't mean "all in my head," and it doesn't even mean "crazy." Suppose you are terribly embarrassed, and your face turns red. That's a psychogenic reaction. It's really red, because there's really more blood in it--you're not just imagining your face is red. And you can't help it. But it's a physical response that was triggered by an emotional state. Similarly, some people get hives when they're under stress. The hives are as real as can be, but their source is psychological as opposed to purely physiological.

I hope no one thinks I'm suggesting that anyone here is having the same experience I am! In fact, it seems likely to me that I'm more susceptible to psychogenic symptoms than the rest of you are. But understanding this a little better has been very liberating to me. I think it is possible that I (and only I) am not as sick as I thought I was--and just understanding this has already (for now, at least!) relieved me of one of my symptoms (the shaking). Since this has been so helpful to me, I am telling my story, though I am worried that someone will think I'm minimizing their symptoms. I certainly don't intend that.

I am hesitant to post this here. If it upsets anyone, I will ask for the post to be removed. One more time, I am only describing my own experience, and not suggesting that anyone here shares it.

Abby