I think it's good to share stories. Conversion disorder is so complicated. My story is that on Feb 7, 2014, I went into the hospital to have a neck fusion done bc of a bulging disk that was laying on a nerve running down my arm to where it was starting to paralyze my arm and hand. I was dropping things and it got to where I could barely use it. I had the surgery and that went well. Well the first couple of days I could tell something was wrong. 22 symptoms that mimic MS. Slurred speech, blurred double vision, my vision completely off, extremelyhigh anxiety, really bad vertigo, off balance, the feeling of being outside of my body, legs walking in quick sand feeling, facial numbness, I had to force myself to make any expression, short term memory loss, including watching movies and couldn't tell u anything about the movie short term and long term, concentration completely off, trouble finding words, could not drive, couldn't sleep, attacks to where I could barely walk and blood pressure and heart rate would spike high, my hands and legs were posturing pointing downward and body stiffness, face drooping, tongue pulls to the back of my throat, constantly repeating myself, trouble thinking straight, add depression in that. I'm sure there's more symptoms but I just can not think of more right now. Which that's alot that I just pointed out. All of these symptoms for 24/7 all day everyday. They don't go away. At the time, i really thought something had to happen in surgery for me to come out like this. So for the first 4 months it was so bad, and I could not drive at all. That's when I started seeing a neurologist. He didn't know what was wrong. He said oh it's all in your head, and gave me antidepressants and a half of mg. of klonipin. That was a joke. He ran no tests on me. I saw him for 10 months. Nothing changed. In the mean time I was still seeing my neuro surgeon and he didn't know what was wrong with me, but yet he never ran any tests on me. He was no help. He says oh well go see a neuro ophthalmologist and maybe your eyes are causing problems with everything else. Well my neuro ophthalmologist said it looked like one eye was just a lil bit slower than the other eye, and with all of my other symptoms she thought that I had a mini stroke. So I went all the way to Cleveland to see a stroke expert, and she said no that I didn't have a stroke. That it was all in my head, to see a neuro psychologist and have a neuro psych evaluation done and see a balance doctor. So I came back to my hometown which is New Orleans and went and had that done, including an ENT doctor. The psych evaluation did show that something was wrong. But nobody knew what it was. So my neuro surgeon ordered me an mri of my brain and neck, and all of that was fine. Negative results on ENT, even though I couldn't even sit on a chair without feeling like I was falling. But then that was with all of my doctors. So I see a rheumatologist, negative results, more neurologists, negative results. Balance doctor, negative results, another neuro ophthalmologist, neg. results. I went to a neuro clinic in Baton Rouge, all negative results. They did MRI's, MRA, spinal tap, eeg's. Nothing, not one thing, all negative results. So throughout this whole time, I was having seizures, but non-epileptic seizures, and they do not show up. So this whole time I feel like I am going absolutely crazy. I became suicidal and went into a psych ward for 2 weeks. They put me on meds and still nothing was really helping. I've been to emergency rooms and it got to where they said it was over their heads, that they couldn't do anything for me. So in the meantime I was seeing a counselor, a psychologist, and a psychiatrist. Nobody knew what the hell was wrong with me. Medicines were getting piled up on me for months. I was up to high mg. Of meds, nothing was stopping any of this. If anything, I was sleeping. I have 2 teenagers that still expected me to take care of them bc they were lazy. They didn't understand any of what I have, so no support with them. Add my husband, he didn't and still doesn't understand what I have. Why not? Well I look normal on the outside, and I am going crazy on the inside. They act like nothing is wrong with me, bc they don't see it. Well I was trying to hide my seizures bc for 1 they gave me no support, and I resent them for that, and for 2, I know it would scare them to see me like that. Well it got to where I couldn't hide the seizures, and that's when they actually see that something is wrong. I posture with my hands and feet down, my tongue goes to the back, I studder and can't get words out, my body stiffens up, I feel like I have ants all inside all over my body, so my body reacts and bangs on things and shakes. It scares them, but by this time I didn't care bc they gave me no support throughout this whole time. It was about time they realized that something is wrong. Well, I had one person that was very supportive after 10 months. That was my dad. He has been my rock throughout this bad adventure of being in prison in my own body. He brought me to doctors and help financially support us, he talk to me about everything and worried with me. Nobody else! Well, we finally went to the Mayo Clinic in Jacksonville, Florida. This was right before my 2 year mark. That is when they diagnosed me with a psychological Conversion Disorder. They said that my surgery was my stresser. So when we got back, I started to see another psychologist and a medical psychologist. I still take alot of meds, and hypnosis hasn't helped bc my body has so much anxiety, that it doesn't allow me to go under. That is with all of my meds that I have to take 3 times per day, everyday. My doctors are just familiar with Conversion Disorder, they do not specialize in it. So now my psychologist wants me to try this other doctor with hypnosis, and my dad found this doctor in Utah that specializes in Conversion Disorder. It's an inpatient facility. That doctors name is Dr. John Speed. He specializes in CD, so why not try it out. So needless to say, I still have all of my symptoms, the meds just take the edge off some. I resent my family for not getting involved like they should, and not getting to know my sickness. They just ask so what did the doctor say? Why bother asking if you don't understand or support me or read up on it or go to the doctor with me. My daughter asked me one day, which she is 19. She says, mom...why do you try and hide your seizures? I said oh really, like when have any of yall gave a shit about my illness. So anyway, my husband says that he will now get more involved, lol. He still hasn't. I don't know if it's just they are in denial or just don't know what to say. This is just part of the reason why i feel so alone in this. So that's my big, long, and miserable story. I have told this story so many times to doctors, friends, and family. I figured it was time for a support group. So here I am. :)
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I think it's good to share stories. Conversion disorder is so complicated. My story is that on Feb 7, 2014, I went into the hospital to have a neck fusion done bc of a bulging disk that was laying on a nerve running down my arm to where it was starting to paralyze my arm and hand. I was dropping things and it got to where I could barely use it. I had the surgery and that went well. Well the first couple of days I could tell something was wrong. 22 symptoms that mimic MS. Slurred speech, blurred double vision, my vision completely off, extremelyhigh anxiety, really bad vertigo, off balance, the feeling of being outside of my body, legs walking in quick sand feeling, facial numbness, I had to force myself to make any expression, short term memory loss, including watching movies and couldn't tell u anything about the movie short term and long term, concentration completely off, trouble finding words, could not drive, couldn't sleep, attacks to where I could barely walk and blood pressure and heart rate would spike high, my hands and legs were posturing pointing downward and body stiffness, face drooping, tongue pulls to the back of my throat, constantly repeating myself, trouble thinking straight, add depression in that. I'm sure there's more symptoms but I just can not think of more right now. Which that's alot that I just pointed out. All of these symptoms for 24/7 all day everyday. They don't go away. At the time, i really thought something had to happen in surgery for me to come out like this. So for the first 4 months it was so bad, and I could not drive at all. That's when I started seeing a neurologist. He didn't know what was wrong. He said oh it's all in your head, and gave me antidepressants and a half of mg. of klonipin. That was a joke. He ran no tests on me. I saw him for 10 months. Nothing changed. In the mean time I was still seeing my neuro surgeon and he didn't know what was wrong with me, but yet he never ran any tests on me. He was no help. He says oh well go see a neuro ophthalmologist and maybe your eyes are causing problems with everything else. Well my neuro ophthalmologist said it looked like one eye was just a lil bit slower than the other eye, and with all of my other symptoms she thought that I had a mini stroke. So I went all the way to Cleveland to see a stroke expert, and she said no that I didn't have a stroke. That it was all in my head, to see a neuro psychologist and have a neuro psych evaluation done and see a balance doctor. So I came back to my hometown which is New Orleans and went and had that done, including an ENT doctor. The psych evaluation did show that something was wrong. But nobody knew what it was. So my neuro surgeon ordered me an mri of my brain and neck, and all of that was fine. Negative results on ENT, even though I couldn't even sit on a chair without feeling like I was falling. But then that was with all of my doctors. So I see a rheumatologist, negative results, more neurologists, negative results. Balance doctor, negative results, another neuro ophthalmologist, neg. results. I went to a neuro clinic in Baton Rouge, all negative results. They did MRI's, MRA, spinal tap, eeg's. Nothing, not one thing, all negative results. So throughout this whole time, I was having seizures, but non-epileptic seizures, and they do not show up. So this whole time I feel like I am going absolutely crazy. I became suicidal and went into a psych ward for 2 weeks. They put me on meds and still nothing was really helping. I've been to emergency rooms and it got to where they said it was over their heads, that they couldn't do anything for me. So in the meantime I was seeing a counselor, a psychologist, and a psychiatrist. Nobody knew what the hell was wrong with me. Medicines were getting piled up on me for months. I was up to high mg. Of meds, nothing was stopping any of this. If anything, I was sleeping. I have 2 teenagers that still expected me to take care of them bc they were lazy. They didn't understand any of what I have, so no support with them. Add my husband, he didn't and still doesn't understand what I have. Why not? Well I look normal on the outside, and I am going crazy on the inside. They act like nothing is wrong with me, bc they don't see it. Well I was trying to hide my seizures bc for 1 they gave me no support, and I resent them for that, and for 2, I know it would scare them to see me like that. Well it got to where I couldn't hide the seizures, and that's when they actually see that something is wrong. I posture with my hands and feet down, my tongue goes to the back, I studder and can't get words out, my body stiffens up, I feel like I have ants all inside all over my body, so my body reacts and bangs on things and shakes. It scares them, but by this time I didn't care bc they gave me no support throughout this whole time. It was about time they realized that something is wrong. Well, I had one person that was very supportive after 10 months. That was my dad. He has been my rock throughout this bad adventure of being in prison in my own body. He brought me to doctors and help financially support us, he talk to me about everything and worried with me. Nobody else! Well, we finally went to the Mayo Clinic in Jacksonville, Florida. This was right before my 2 year mark. That is when they diagnosed me with a psychological Conversion Disorder. They said that my surgery was my stresser. So when we got back, I started to see another psychologist and a medical psychologist. I still take alot of meds, and hypnosis hasn't helped bc my body has so much anxiety, that it doesn't allow me to go under. That is with all of my meds that I have to take 3 times per day, everyday. My doctors are just familiar with Conversion Disorder, they do not specialize in it. So now my psychologist wants me to try this other doctor with hypnosis, and my dad found this doctor in Utah that specializes in Conversion Disorder. It's an inpatient facility. That doctors name is Dr. John Speed. He specializes in CD, so why not try it out. So needless to say, I still have all of my symptoms, the meds just take the edge off some. I resent my family for not getting involved like they should, and not getting to know my sickness. They just ask so what did the doctor say? Why bother asking if you don't understand or support me or read up on it or go to the doctor with me. My daughter asked me one day, which she is 19. She says, mom...why do you try and hide your seizures? I said oh really, like when have any of yall gave a shit about my illness. So anyway, my husband says that he will now get more involved, lol. He still hasn't. I don't know if it's just they are in denial or just don't know what to say. This is just part of the reason why i feel so alone in this. So that's my big, long, and miserable story. I have told this story so many times to doctors, friends, and family. I figured it was time for a support group. So here I am. :)
February 9, 2014 - 1:59pmThis Comment
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