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Is it Conversion Disorder?

By Anonymous April 11, 2011 - 7:03am
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I have Myasthenia Gravis (sero-negative). My diagnosis came about as a result of a positive Tensilon test, family history, SFEMG (occular at the time) and clinical symptoms. I also have Graves Disease.

My symptoms include muscle weakness in my extremities after prolonged use, occassional dysphasia, slurred speech (again after extended periods of talking) as well as double vision. When I do present in the ER, it is because I cannot swallow without choking on my own saliva and I can feel myself going limp. Most of these symptoms occur over a period of weeks.

I do not lose feeling in any part of my body. I do not go blind. I do not have seizures.

I am currently on Synthroid for my thyroid and MG meds include Prednisone, Imuran and Mestinon.

My neurologist decided that I should have psychological testing, because she felt I had some psychological functional overlay. After 160+ T/F questions, the diagnosis was Conversion Disorder. I was prescribed Wellbutrin by my psychiatrist and see him every 5 to 6 weeks.

At one point my neurologist felt that I displayed drug seeking behaviour (going for big guns instead of taking an aspirin), however, I have since found out that things like the awful pain and swelling in my wrists and hands are a direct result of osteoarthritis. My rheumatologist has prescribed stronger painkillers.

I am also on a Bi-Pap machine whenever I lay down for a rest and my neurologist has said that she only wants me to use the machine at night. After an in hosp sleep study, my Pulmonologist wants me to use the machine whenever I lay down, in case I fall asleep. Without the machine, I end up with wayyyy too much carbon dioxide in my blood.

I have nothing against the psychiatric field, but I also wonder if maybe the T/F test and my admission of being molested as a child are enough to warrant such a diagnosis? Or, perhaps I didn't answer the questions properly or, perhaps I shouldn't have said anything about being molested?

Most times, when I see my psychiatrist, we usually just shoot the breeze. For instance, how's the family, what's happening in your life, etc. Sometimes I feel I get more out of talking to a close friend.

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EmpowHER Guest

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 - 5:24pm
EmpowHER Guest

Just watched an interesting video by a psychiatrist who claims that conversion/somatization disorder is a useless diagnosis, because it relies on the assumption that an unknown to the patient internal conflict is the cause of the behavior. As there is no rational path to discover the conflict, then no rational therapy can be pursued. And thus the patient, feeling like (s)he is accused of being irrational, then often stops seeking any treatment at all. He thinks it's better to just look at the spectrum of basic normal treatable symptoms like depression, anxiety, irritability, and things like that, and tackle those symptoms with therapy and/or medications and/or exercises.

January 30, 2015 - 9:02pm

I have MG also. I am thinking that another neurologist should be considered for a 2nd opinion. Having been hospitalized in ICU too often in MG crisis, I know that very few neurologists or any doctor for that matter is fully aware of MG, especially if you live in a small community. I attend the annual conferences and bring home information to my neurologist - we are on a learning curve together. You can try myasthenia.org or even a teaching/research hospital that specializes in MG. I have a fear that too many doctors are quick to refer us women to psychiatrists for conditions that need specialized treatment. (My mother had severe back issues and was told it was in her head by her PCP, until she was taken to the ER by ambulance and treated by a doctor with knowledge.) Good luck & God bless.

October 27, 2011 - 11:11am
HERWriter Guide

Hi Anon

Thanks so much for your post and I'm sorry you're dealing with this issue.

We cannot tell you if you have Conversion Disorder or not although one of the causes is childhood trauma like sexual abuse (and you were right to tell them about it/I'm very sorry this happened to you). However, obviously most survivors of child sex abuse don't have Conversion Disorder.

I'm not sure of the test you took but was that all you took in order to get the diagnosis? What other criteria was used - what other testing? Did you do any talk therapy before you were diagnosed? That's a rather fast way to make such an important diagnosis although there are no definitive tests out ther for this disorder. Were there any physical tests done to rule out anything else?

Regarding the C-PAP, you need to get both doctors on the same page about that. When one says the opposite of the other, it's obviously very confusing for the patient.

About your psychiatrist, he may be using some kind of method to get to understand you more but if all he's doing is general chit-chat then get yourself to another doctor and particularly one that specializes in Conversion Disorder.

One last thing - it's interesting that you have an official diagnosis of Myasthenia Gravis. Conversion Disorder often copies the symptoms of Myasthenia Gravis. Therefore I'm not understanding why you got the diagnosis of Conversion Disorder, ALONGSIDE Myasthenia Gravis and Graves Disease. Your symptoms are that of these last two conditions, and you have a diagnosis of both. Do you understand what I mean?

Let me know what you think!

April 11, 2011 - 1:21pm
EmpowHER Guest
Anonymous (reply to Susan Cody)

Thank you for your timely response.

My neurologist felt that I did not "present" the way someone with MG normally would and she therefore felt there was some "functional overlay". Hence the 160+ T/F questions and a meeting with the psychiatrist about my being molested.

I do have to say that being molested is something that I dealt with several years ago with another psychiatrist. It doesn't consume my life and I have no trouble talking about it.

I was supposed to talk to a psychiatrist who uses CBT (Cognitive Behaviour Therapy), but there again, I wondered just what this was supposed to do for me.

Questions about Conversion Disorder: does it really just go away after a few weeks? Or, does it just go away, once you acknowledge that you have it? What can I do to acknowledge it and MOVE ON with my life?

The issue with my Bi-Pap is something that my neurologist has said will defer to the experts.

April 11, 2011 - 1:53pm
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