Hello! I have myasthenia gravis, Graves disease, and an unusual presentation that makes doctor suspicious, too. I can't believe how similar our stories are. My MG was also diagnosed by SFEMG.
My first MG symptoms appeared in 2009 after a Graves flare and then a bout with H1N1. I had typical MG symptoms of weakness, but also collapsing episodes. I would go limp and collapse to the floor and be too weak to get up for up to 45 minutes. These occurred almost daily. At one point, I was on the floor so often that the kids would just step over me, or bring me a pillow. This went on for almost five years.
In July of 2014 I developed a new symptom: uncontrollable violent shaking. I thought it was my thyroid acting up, but the tests were repeatedly normal. I went to the neuro. He told me gently he thought my shaking was psychogenic, and why--evidently I stopped shaking when he distracted me. Well, I was devastated. I left the office in tears. But I stopped shaking. I haven't shaken since.
When I noticed the dramatic change, I thought, "Well, I wonder what other symptoms I have that are psychogenic." And I haven't had a collapsing spell since that thought. It's been over a year.
I do not think I have conversion disorder. I think my shaking and collapsing were psychogenic responses to the physical sensations of weakness that MG causes. Psychogenic, yes. Emotional, no. I am not anxious or depressed, and I don't have any huge traumas in my life. I also think that my collapsing spells could have shown up in some sort of lab test, if the doctors knew what to look for. They were as real as blushing when you're embarrassed is real, or having a fast heartbeat when you're scared is real. But their ultimate cause (like blushing or a pounding heart) was psychological. In other words, the collapsing weakness wasn't in my head; but the cause of it was. Apparently.
I have no idea how common my story is. I am certainly not suggesting that you have psychogenic overlay, too. There are many, many neurological diseases that doctors haven't figured out yet. Think how many MG patients must have been diagnosed as "hysterical" before MG was even discovered. There are new MG antibodies being discovered all the time, and they all cause different symptoms. So I don't think it's very likely that you are suffering from psychogenic overlay like I was (and I don't think much of the questionnaire you describe!) I'm just telling my story on the small chance that it might help you. For me, just the word "psychogenic" (said respectfully and backed up with hard evidence) changed my life. A year and a half ago I was shopping for a reclining wheelchair. Now I have only very mild MG symptoms.
All of this is only my best guess about myself. Maybe my disease went into remission spontaneously. I hear that happens. But I'm very grateful to be so much improved, and I hope you get some good surprises, too.
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Hello! I have myasthenia gravis, Graves disease, and an unusual presentation that makes doctor suspicious, too. I can't believe how similar our stories are. My MG was also diagnosed by SFEMG.
My first MG symptoms appeared in 2009 after a Graves flare and then a bout with H1N1. I had typical MG symptoms of weakness, but also collapsing episodes. I would go limp and collapse to the floor and be too weak to get up for up to 45 minutes. These occurred almost daily. At one point, I was on the floor so often that the kids would just step over me, or bring me a pillow. This went on for almost five years.
In July of 2014 I developed a new symptom: uncontrollable violent shaking. I thought it was my thyroid acting up, but the tests were repeatedly normal. I went to the neuro. He told me gently he thought my shaking was psychogenic, and why--evidently I stopped shaking when he distracted me. Well, I was devastated. I left the office in tears. But I stopped shaking. I haven't shaken since.
When I noticed the dramatic change, I thought, "Well, I wonder what other symptoms I have that are psychogenic." And I haven't had a collapsing spell since that thought. It's been over a year.
I do not think I have conversion disorder. I think my shaking and collapsing were psychogenic responses to the physical sensations of weakness that MG causes. Psychogenic, yes. Emotional, no. I am not anxious or depressed, and I don't have any huge traumas in my life. I also think that my collapsing spells could have shown up in some sort of lab test, if the doctors knew what to look for. They were as real as blushing when you're embarrassed is real, or having a fast heartbeat when you're scared is real. But their ultimate cause (like blushing or a pounding heart) was psychological. In other words, the collapsing weakness wasn't in my head; but the cause of it was. Apparently.
I have no idea how common my story is. I am certainly not suggesting that you have psychogenic overlay, too. There are many, many neurological diseases that doctors haven't figured out yet. Think how many MG patients must have been diagnosed as "hysterical" before MG was even discovered. There are new MG antibodies being discovered all the time, and they all cause different symptoms. So I don't think it's very likely that you are suffering from psychogenic overlay like I was (and I don't think much of the questionnaire you describe!) I'm just telling my story on the small chance that it might help you. For me, just the word "psychogenic" (said respectfully and backed up with hard evidence) changed my life. A year and a half ago I was shopping for a reclining wheelchair. Now I have only very mild MG symptoms.
All of this is only my best guess about myself. Maybe my disease went into remission spontaneously. I hear that happens. But I'm very grateful to be so much improved, and I hope you get some good surprises, too.
September 26, 2015 - 5:24pmThis Comment
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