I started to get better at the end of June. I have had partial remissions before, but they never lasted more than a couple of months. This one's going on five. Right now, I am close to symptom-free. I feel some muscle fatigue, but nothing like it used to be. I have not had a collapsing spell since June.

I didn't change my diet or take any supplements or new drugs. If I had gone gulten free, or paleo, or if I had started taking some supplement, I'd be a True Believer. But it would have been a coincidence.

You can read in one of my previous posts how I started shaking in June, and how my neuro suggested it was a psychogenic symptom, and how, to my great surprise, that turned out to be true--because just the suggestion that it was psychogenic stopped it in its tracks. I stopped shaking when I left his office, and haven't shaken since.

Were all my symptoms psychogenic? That's possible, but I don't think so. My best guess is that the symptoms of MG (or whatever I have) messed with my head, and caused some additional psychogenic symptoms in response, like the shaking, and possibly the spells of intense weakness. But I think the psychogenic symptoms were caused by my experience of the neurological disorder. I don't really know. That's just a guess. It hasn't escaped my notice that I started to get better from everything--not just the shaking--at the mention of the word "psychogenic." My best guess is that I do have a neurological disorder, but that many of the symptoms were psychogenic responses to the disorder, and not part of the disorder itself.

That makes some sense to me. MG is a weird and unpredictable disease. It comes and goes. New symptoms pop up and disappear. I went a year and a half without a diagnosis. I'm evidently susceptible to psychogenic symptoms (evidence: the shaking), so maybe MG is just the sort of thing that would mess with my head. In other words, all of my symptoms were caused by MG--but maybe some of those symptoms were caused indirectly, as psychogenic responses to the directly-caused symptoms.

I went to a psychiatrist with my story for help in figuring it all out. She wasn't helpful. She offered to treat me for depression and anxiety. I don't think I have depression or anxiety, and when I asked her why she thought I did, she had no answer.

I want to make it crystal-clear that although I had some clearly psychogenic symptoms, and some other symptoms that may have been psychogenic, I don't suggest that anyone here has the same experience as me. This is just me I'm talking about. Just because I'm susceptible to psychogenic symptoms doesn't mean anyone else is.

I stopped taking Imuran at the end of June. I took it for several years, and never saw a difference. Mestinon never helped me. IVIg doesn't seem to, either. I'm seronegative. I have only had eye symptoms briefly a few times since 2009, when I had my first symptoms.

So maybe I don't have MG at all. I was diagnosed by an MG specialist by SFEMG--he said the results were strongly positive, even though my local neuro had done two previous SFEMG's on me that came out "borderline." What to make of that? I have no idea.

I don't know what's going on. I'm well aware that all the symptoms could return at any time. I know this story isn't very coherent. I'm posting it here just to update those who have been so kind to me over the past few years, and maybe also to say that you never know what's going to happen.

Abby

I am glad you are better. That is the main thing. I hope that all the rest of this gang gets better too.

No matter what caused your initial symptoms, finding out that something weird is going on with your health will mess with your head. If it didn't, you would be crazy.

Stay well my friend.

Abby so happy to hear you are doing well. Don't question it, ENJOY IT!
Mike

I don't know what to say, Abby. Do you think you were misdiagnosed? Did the Imuran actually work, and the effect on your immune system is still in place?

Does a doctor know that you stopped medications?

This is a tough topic to talk about for many patients, since doctors tend to throw that "it's all in your head" BS at us all of the time, when, in fact, the vast majority of people have very real diseases.

Maybe if our pineal glands kicked in and could connect our minds with our bodies, all of us could heal ourselves. I'm not holding my breath!

I hope you don't have MG. If you do, though, I doubt that any symptoms that would come back are all in your mind.

Annie

Annie, as you can imagine, I was hesitant to post my story, because believe me, the last think I wanted was to suggest that anyone's symptoms weren't real! But I know that there's no such thing as an illegitimate experience, and I know that I am welcome to post my experience here, just as everyone else is welcome to post theirs. There are no stories that need to be left untold because of what other people might think. My story is my story. A psychogenic illness is an illness, and as all of us know, attaching a stigma to an illness helps no one.

It isn't helpful to use the word "real" to describe non-psychogenic symptoms, because it dismisses the legitimacy and reality of psychogenic ones. Think of it this way: if you are embarrassed, and your face turns red, that's a psychogenic symptom. Your face is really red, and there is a real physiological explanation for it: your blood vessels are truly dilated (or whatever). If you hear terrible news and faint, that's psychogenic, but it's physiological: your low blood pressure can be measured, etc. If you are terrified and start shaking, it's not "all in your head"--it's because of adrenalin. The adrenalin is "real." "Psychogenic" doesn't mean imaginary, or fake, or "all in your head." Even a rash can be psychogenic.

When I was undiagnosed, my biggest fear was that my illness would be dismissed as "all in my head." When my doctor suggested my shaking was psychogenic, he wasn't being dismissive--he noticed things about it (for example, it stopped when I was distracted) that indicated the diagnosis. He was very gentle and respectful. When he used that word, "psychogenic," I was devastated. I burst into tears. I told him, "I'd rather be sick than crazy." Like I say, my worst nightmare. But he was convincing enough to give me the key I needed to overcome that symptom. And my understanding now is that my susceptibility to the psychogenic shaking wasn't "craziness" or any sort of mental or emotional weakness--it was a response to the weird neurological symptoms I was having.

About six weeks after I went off the Imuran, I had a recurrence of a mild autoimmune disease I've had my whole life--atopic dermatitis. It's mild, and I hadn't really noticed the Imuran took it away. Now I'm itchy again. But the MG symptoms are goner than ever.

If my MG symptoms come back, I certainly won't think they're "all in my mind." After all, it was my body that used to fall to the floor, not my mind, and I certainly didn't want to fall to the floor or intend to fall to the floor or make myself do it. And if my MG symptoms come back, I won't assume they're psychogenic, either. I have been very careful to be clear here and to myself that I don't know. I have overwhelming evidence that the shaking was psychogenic. That's all I know.

One more time: I don't post my story here to suggest that anyone else's symptoms are psychogenic. If I had to guess, I'd guess they aren't. My MG symptoms have always been atypical. But I do claim the right to talk about myself without having anyone assume I'm implying anything about anyone else.

I wish you all encouragement and wellness, and I thank you all for your gentle response to my difficult story. I am working very hard to resist the temptation to feel humiliated by it.

Abby

Wow, my post was well-meaning and well-intentioned, too.

You have the sovereign right to be who you are and to say what you want to say, as does everyone here!

Abby, why on earth would you feel humiliated. I think that your story, whilst a bit weird (as you said yourself), is extremely interesting.

My concern is that too many Doctors are thinking "psychogenic" or "all in your head", rather than looking for the real cause.

You clearly had a Doctor, who spent the time and energy to gently suggest psychogenic. I suspect that most Doctors do not have that sort of finesse. One of mine suggested it was in my head, and then promptly closed down and refused to discuss any further symptoms, which I considered, unlikely to have been psychogenic.

But everyone is different. I hope you remain well, and update us here from time to time if things change... for the better or worse.

Thanks, Juliejayne. I think you focused in on what needs to be emphasized here: although there is such a thing as psychogenic symptoms, in the case of MG, the overwhelming problem is that neurological symptoms are wrongly diagnosed as psychogenic, and not the other way around.

What I learned from my experience is that:

1. Psychogenic doesn't mean "all in your head." Psychogenic symptoms aren't imaginary or faked or not "real."

2. It's possible that neurological symptoms can generate additional psychogenic ones. In other words, it's wrong to think that an illness must be either psychogenic or neurological. In my case, I think I was having neurological symptoms with an "overlay" of psychogenic symptoms.

Abby

Abby,

I think you have hit on a very good point.
Unfortunately, my experience says that most doctors, fail to understand or to properly communicate this to their, understandably, upset patients.

At least one of my specialists, clearly suggested this (looking back with hindsight), but put it in such a way that it was impossible for me to accept, and he refused to answer any further questions, it was simply a statement.

It seems like there are doctors out there who call symptoms "psychogenic" with no other evidence than that they can't find any other diagnosis. That's bad medicine for all sorts of reasons. There are some objective diagnostic criteria for psychogenic movement disorders. One reason I was able to listen to my doctor when he suggested my shaking was psychogenic was that he explained some of these criteria to me and they made sense.

Part of the stigma attached to the "psychogenic" diagnosis comes from the idea that psychogenic disorders are always a response to emotional trauma (conversion disorder). So if you have psychogenic symptoms, you must be really "messed up" emotionally--you're a wreck. Well, I don't feel like an emotional wreck. Emotionally, my life is in decent order. I'm not a hysterical person. But my theory (speculation) is that scary and unpredictable neurological symptoms can also trigger additional psychogenic symptoms. My shaking (I'm guessing) wasn't a reaction to an emotional trauma; it was a reaction to my experience of MG symptoms.

This phenomenon is called "psychogenic overlay": the patient has a mixture of symptoms. Some are directly caused by the neurological disorder, and some are a physiological response to the patient's perception of the first symptoms. That's my best guess about what happened to me. Thanks to a friend I met on this forum who helped me figure all this out.

Abby