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

I sometimes wonder about myself. Thanks for sharing.

Do you think your MG may be complicated by narcolepsy, another autoimmune disease?

kathie

Kathie, yes, I looked into other diseases (rather obsessively, as I'm prone to do), but nothing remotely fits. Also, I noticed that the collapsing spells always came when my typical myasthenic symptoms were worse. If the collapsing is a psychogenic response to the myastheic symptoms--and I'm not saying I'm sure it is--this makes sense.

Before I got this idea (from a really smart friend), I thought that any psychogenic element would indicate that the whole shebang is psychogenic--and it is very hard for me to believe that. But it makes sense to me that such a devastating disease could trigger psychogenic reactions in addition to its own symptoms. It took a year an a half for me to get a diagnosis. For that whole time, I was very anxious, and every noticeable symptom was a reminder that I had some mysterious disease, and that I didn't know what was going to happen to me next. You don't have to be mentally ill for an experience like that to mess with your mind.

Abby

This illness will drive you crazy.

The actually falling that I have done I am pretty sure is the real deal; muscles just quitting on me. I say this because it doesn't happen when I take medication. I have also been short of breath for years before I was diagnosed. I thought it was heart or lung trouble. Both of those were ruled out and I breathe much better with treatment.

It is really hard to say about the tiredness. Depression can cause it. MG can cause depression just because it is so dang aggravating to be sick .

It makes me mad because I used to have relentless energy.

We are very complex organisms. The psyche greatly effects the physical body.

Dang it.

Abby, This is an exceptional post, and I admire you for being so honest.

The neurotransmitters are really quite nuts. Did you know that too much acetylcholine might contribute to depression? Too much serotonin can cause insomnia?

http://www.psychiatrist.com/pcc/brainstorm/br5812.htm

Since MGers already have an imbalance of acetylcholine, or, rather, how much gets to our muscles, you have to wonder what other neurotransmitter imbalances might follow.

Maybe you're just having abnormal releases of noradrenaline or other neurotransmitters and need to have your hypothalamic-pituitary-adrenal axis checked. Have you seen an endocrinologist recently?

A lot of the psychogenic arguments have a huge chicken/egg component, as you know. Just as that fight or flight fear response kicks in adrenaline, etc., too much adrenaline from a pathological source (tumor) can cause a fight or flight response.

http://www.endocrineweb.com/endocrin...adrenal-glands

It's hard to say if it's truly psychogenic, or if having a doctor say that it was prompted you to relax about the symptoms. Meditation, which makes us relax, too, might be something you want to try (if you haven't already).

That calm balance is very hard to maintain with so many challenges. Even after a couple of decades of doing it, I still have days (like after the flooding we just had) where I totally lose it.

A neurologist I saw once spoke about how those pesky neurotransmitters can cause increased weakness if you become really upset. He wasn't specific about it, so I did some research for you.

Can you and your doctor come up with a way to mentally get rid of MG? Now that would be useful.


Annie


http://www.sciencedaily.com/articles...ous_system.htm

http://www.psychologistworld.com/stress/fightflight.php

http://www.ncbi.nlm.nih.gov/books/NBK28139/

http://www.longecity.org/forum/topic...line-and-mood/

http://en.wikipedia.org/wiki/Norepinephrine (I hate quoting wiki!)

My son tried to teach me a meditation technique that he learned from some Buddhist monks. (He went to the classes because they were free and they gave you free food.) He said to concentrate on my breathing and relax. When I start to think about my breathing, it makes me panic because trouble breathing my worse symptom. So that makes me worse.

Meditation doesn't necessarily focus on breathing! No wonder it didn't work. It's about imagery and the brain. I never got free food—no fair!

Annie

I probably get some of the same benefits that people get from meditation by playing or listening to music.

I used to get that sort relaxation from reading books. With unresolved Diplopia, that is no longer an option.