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Conversion Disorder Possible Misdiagnosis
I am 33 year old female with an established diagnosis of Behçet's disease. I am a patient of Johns Hopkins Rheumatology for 8 years. The past few months i've been experiencing some signs that something strange was going on. I would fall all of the time, hurt my foot, broke my toe. I noticed walking upstairs barefoot I was weight bearing on the balls of and outsides of my feet. It felt strange to make my foot go flat on the ground. I was experiencing visual issues. I would reach for a doorknob & miss & misjudge where the table was and drop things. I went for a visual field test at my local opthamologist office & I majorly failed with my peripheral vision in my left eye. I had a brain mri with contrast which showed non specific white matter changes on my brain. But ruled those out as nonsuspect.
Then on November 18th I had an episode. The day prior I wasn't feeling well & I needed help walking up and down stairs because they looked as though they were coming up at me. On the 18th, I was driving & had vertigo where the line in the road looked like the hand on a clock & flipped vertically. I was near the exit for my local hospital in northeastern pennsylvania. I pulled in to the parkade & became disoriented. I fell and continued to make my way to the ER. My arms & legs began to feel very heavy & weak. More on the left side. When I got to the ER I had some slurred speech. They triaged me.
My hospital is a small rural hosp. The doc ordered a catscan without contrast and bloodwork. He did not do a neurology consult. As I was waiting for him to come back, we found when I had to go to the bathroom that I was so weak I couldn't walk. I needed 1 to 2 people to help me. Doc came back and said my tests were normal and he was sending me home. My family were upset and told him I couldn't walk.
My pcp's associate was luckily at the hospital and she came and did a full exam. She admitted me with the diagnosis of a suspected TIA. I was then seen the next day by the neurologist. He asked if I was making up feeling weak. He said he wasn't sure what was causing my legs not really wanting to move. He did a brain mri with contrast and a spinal mri. Both came back normal. I called my rheumatologist at Hopkins & they wanted me transferred inpatient to them. I was at my local hospital for 4 or 5 days until I was transferred to Hopkins. When I arrived it was 2am and I had a resident neurology consult. She noticed a slight tremor in my hands. While I was there I saw numerous neurologists and had another brain and spine mri and a lumbar puncture. All can't back normal. My bloodwork came back normal except for a slight Zinc deficiency. They said I am more brisk on my left side.
I started noticing my left foot was turning inward slightly but I thought it was weakness. Due to my normal tests and my appearance mostly of being extremely weak, they transferred me to a local physical rehab facility to try and rebuild my strength. Last day at Hopkins where I was waiting to go to the facility? I started "shaking" a little bit more in my hands & feet. More in my left side but both.
I got to the rehab facility & it was the first time I was moving around & noticed I was tremoring during movement. It was more in my feet and legs but also in my hands & arms. At rest, I wasn't tremoring much unless my hands feet were stimulated. Left foot started turning & my toes curling under on my left foot. My feet didn't want to lift of the ground. Once they did, they would shake so badly & would not want to go back down to the floor. I needed three therapists & a high walker on 4 wheels with someone following with a chair to help me "walk". They said the tone was very strong in my toes. My left hand started mimicking my left toes by my left fingers curling under. The toes are very painful as they are always spasming & curled. My boyfriend told me I started tremoring in my sleep at times. The rehab facility tried all kinds of movements but the tremoring stayed the same and then got worse. My peripheral vision is worse. My speech is slow & drawn out & I have trouble saying certain words. I can see the words but not say them. I was in speech therapy & I am now mild to moderately cognitively impaired. My deductive reasoning, memory and attention span were impacted. They sent me home 2 weeks ago making my stay in all 3 hospitals just over a month long. Home health nursing, PT, OT & speech therapist coming to the house. I have a hospital bed and I am completely wheel chair bound. They sent me to an orthotist to try and get a mold for braces. He said there was no way. He was very nice and said I really should be treated with something other than just therapy.
The therapist at home also was concerned & said I should see a neurologist immediately. Im so much worse so quickly that my toes are completely curled all if the time & the podiatrist consult said it looks like hammer toes forming. This is just over a 3 week period. I'm tremoring at rest more severely.
My pcp saw me & was alarmed at the progression & wanted me admitted. I was admitted to another local hospital. They performed an MRI, MRA, MRV with contrast. My tremors are so strong that I needed to be placed under general anesthesia. All tests normal. All my immunosuppressants I've taken for 8 years: Methotrexate, Cellcept, Colchicine. My levels were normal.
They started on Baclofen No noticeable change after three days.
Sent me outpatient to a Movement Disorder Specialist. When I saw him he did an eval of my movements. He did not want to go over my past history & the months leading up to this. He was insistent on my being able to go faster & stronger when I could not. He had me try to walk with a belt strapped around my waist. I could barely walk three feet. My feet did not want to lift. My left foot turned inward. I started to breathe so heavy I had to stop. He said I was too anxious but really I hadn't done any real physical activity on weeks and it was fatiguing.
He then say down & asked me about my childhood. I said it was good. No abuse or molestation. He asked how my home life is. I have a very happy home life in the happiest relationship I've been in. He asked if I talk to my family & I said I do not. He said why?! I said we just argued too much and we just stopped talking about 5 years ago. He said "that's strange. I talk to my family". I said there was no big blow up. We just stopped gradually after just always arguing about insignificant things. He then asked about my job. I said it was stressful but I work in a stressful field of insurance. It was almost as though he was trying so hard to get me to agree that I was terrified of my job or family. If the answer was yes, I would have told him so. The honest answer is that nothing has really happened. My Behcets is manageable so I don't get stressed from that. I am an artist and I enjoy spending time with friends. I have never done drugs & I avoid alcohol from my meds.
He finally said I think this is conversion disorder from extreme stress. The only thing is "you don't fit having a specific episode." This part left me confused. He said it is involuntary & i am not causing it consciously. But he prescribed an anti depressant & an anti anxiety pill. I then said the psychologist at the rehab facility evaluated me as they do with all patients. Both told me this is not in my head and he said "they're the ones who are crazy. Probably no one wanted to hurt your feelings." Inappropriate.
I never had an EEG or EMG. Granted, my tests were normal with the exception of slight zinc deficiency, slight hemoglobin deficiency & white matter changes which aren't a concern. But I presented as a different patient at Hopkins.
Is it fair to say this is conversion disorder? If it is I'm willing to accept that. The brain does strange things. Please help.
Then on November 18th I had an episode. The day prior I wasn't feeling well & I needed help walking up and down stairs because they looked as though they were coming up at me. On the 18th, I was driving & had vertigo where the line in the road looked like the hand on a clock & flipped vertically. I was near the exit for my local hospital in northeastern pennsylvania. I pulled in to the parkade & became disoriented. I fell and continued to make my way to the ER. My arms & legs began to feel very heavy & weak. More on the left side. When I got to the ER I had some slurred speech. They triaged me.
My hospital is a small rural hosp. The doc ordered a catscan without contrast and bloodwork. He did not do a neurology consult. As I was waiting for him to come back, we found when I had to go to the bathroom that I was so weak I couldn't walk. I needed 1 to 2 people to help me. Doc came back and said my tests were normal and he was sending me home. My family were upset and told him I couldn't walk.
My pcp's associate was luckily at the hospital and she came and did a full exam. She admitted me with the diagnosis of a suspected TIA. I was then seen the next day by the neurologist. He asked if I was making up feeling weak. He said he wasn't sure what was causing my legs not really wanting to move. He did a brain mri with contrast and a spinal mri. Both came back normal. I called my rheumatologist at Hopkins & they wanted me transferred inpatient to them. I was at my local hospital for 4 or 5 days until I was transferred to Hopkins. When I arrived it was 2am and I had a resident neurology consult. She noticed a slight tremor in my hands. While I was there I saw numerous neurologists and had another brain and spine mri and a lumbar puncture. All can't back normal. My bloodwork came back normal except for a slight Zinc deficiency. They said I am more brisk on my left side.
I started noticing my left foot was turning inward slightly but I thought it was weakness. Due to my normal tests and my appearance mostly of being extremely weak, they transferred me to a local physical rehab facility to try and rebuild my strength. Last day at Hopkins where I was waiting to go to the facility? I started "shaking" a little bit more in my hands & feet. More in my left side but both.
I got to the rehab facility & it was the first time I was moving around & noticed I was tremoring during movement. It was more in my feet and legs but also in my hands & arms. At rest, I wasn't tremoring much unless my hands feet were stimulated. Left foot started turning & my toes curling under on my left foot. My feet didn't want to lift of the ground. Once they did, they would shake so badly & would not want to go back down to the floor. I needed three therapists & a high walker on 4 wheels with someone following with a chair to help me "walk". They said the tone was very strong in my toes. My left hand started mimicking my left toes by my left fingers curling under. The toes are very painful as they are always spasming & curled. My boyfriend told me I started tremoring in my sleep at times. The rehab facility tried all kinds of movements but the tremoring stayed the same and then got worse. My peripheral vision is worse. My speech is slow & drawn out & I have trouble saying certain words. I can see the words but not say them. I was in speech therapy & I am now mild to moderately cognitively impaired. My deductive reasoning, memory and attention span were impacted. They sent me home 2 weeks ago making my stay in all 3 hospitals just over a month long. Home health nursing, PT, OT & speech therapist coming to the house. I have a hospital bed and I am completely wheel chair bound. They sent me to an orthotist to try and get a mold for braces. He said there was no way. He was very nice and said I really should be treated with something other than just therapy.
The therapist at home also was concerned & said I should see a neurologist immediately. Im so much worse so quickly that my toes are completely curled all if the time & the podiatrist consult said it looks like hammer toes forming. This is just over a 3 week period. I'm tremoring at rest more severely.
My pcp saw me & was alarmed at the progression & wanted me admitted. I was admitted to another local hospital. They performed an MRI, MRA, MRV with contrast. My tremors are so strong that I needed to be placed under general anesthesia. All tests normal. All my immunosuppressants I've taken for 8 years: Methotrexate, Cellcept, Colchicine. My levels were normal.
They started on Baclofen No noticeable change after three days.
Sent me outpatient to a Movement Disorder Specialist. When I saw him he did an eval of my movements. He did not want to go over my past history & the months leading up to this. He was insistent on my being able to go faster & stronger when I could not. He had me try to walk with a belt strapped around my waist. I could barely walk three feet. My feet did not want to lift. My left foot turned inward. I started to breathe so heavy I had to stop. He said I was too anxious but really I hadn't done any real physical activity on weeks and it was fatiguing.
He then say down & asked me about my childhood. I said it was good. No abuse or molestation. He asked how my home life is. I have a very happy home life in the happiest relationship I've been in. He asked if I talk to my family & I said I do not. He said why?! I said we just argued too much and we just stopped talking about 5 years ago. He said "that's strange. I talk to my family". I said there was no big blow up. We just stopped gradually after just always arguing about insignificant things. He then asked about my job. I said it was stressful but I work in a stressful field of insurance. It was almost as though he was trying so hard to get me to agree that I was terrified of my job or family. If the answer was yes, I would have told him so. The honest answer is that nothing has really happened. My Behcets is manageable so I don't get stressed from that. I am an artist and I enjoy spending time with friends. I have never done drugs & I avoid alcohol from my meds.
He finally said I think this is conversion disorder from extreme stress. The only thing is "you don't fit having a specific episode." This part left me confused. He said it is involuntary & i am not causing it consciously. But he prescribed an anti depressant & an anti anxiety pill. I then said the psychologist at the rehab facility evaluated me as they do with all patients. Both told me this is not in my head and he said "they're the ones who are crazy. Probably no one wanted to hurt your feelings." Inappropriate.
I never had an EEG or EMG. Granted, my tests were normal with the exception of slight zinc deficiency, slight hemoglobin deficiency & white matter changes which aren't a concern. But I presented as a different patient at Hopkins.
Is it fair to say this is conversion disorder? If it is I'm willing to accept that. The brain does strange things. Please help.
I suspect that you may have Atlanto-Axial Instability due to synovitis. You need an upright mri of brain and cervical junction area. You may also require a digital motion X-ray. See a neurosurgeon who specializes in craniocervical junction area and stay clear of neurologists. Functional Movement Disorder is diagnosed by unhappy neurologists.
I went for a second opinion at Strong Memorial hospital - one of the best - the neurologist there consulted even though 4 neurologists insisted it was conversion disorder. He immediately said it looked like a medication at a toxic level. Sure enough - that's what it was.... so angry I could have spit nails that they basically said it was all in my head. They did tons of blood work .... but not my medication levels.
I am 32 years old. 5 years ago I was diagnosed with Conversion Disorder. I would say they should have done an EEG on you just to prove that the symptoms were not coming from your brain. All you described I have had as symptoms and have tried to prove them wrong saying it was something else but I do have anxiety major anxiety problems. I've have 4 EEG'S in the past 5 years all came back negative for Epilepsy. So I can not say for certain you do have it but what you experienced or are experiencing I have experienced on and off for the past 5 years and it has been a nightmare.
From the Patient UK website - Behçet's disease...
"Neurological: central nervous system (CNS) involvement occurs late in the disease. Memory impairment is the most common CNS manifestation. Impairment of balance, speech and movement can also occur. Thrombosis within the dural venous sinuses may occur. Peripheral nerve involvement is rare.[3]"
"Patients with CNS involvement require the most aggressive treatment, usually with a corticosteroid plus either azathioprine, cyclophosphamide, or a TNF-alpha inhibitor."
***
Parkinsonian syndrome as a neurological manifestation of Behçet's disease. Can J Neurol Sci. 1998 Feb;25(1):82-5.
BACKGROUND:
The central nervous system is often involved in Behcet's disease. Most common are meningoencephalitic and brain stem syndromes. Although basal ganglia involvement is not an uncommon finding on necropsy, there are only single reports on extrapyramidal syndromes-dyskinesia, chorea and Parkinsonism in patients with Behcet's disease.
CASE STUDY:
We report a patient fulfilling the criteria of the International Study Group for Behcet's disease. He had recurrent oral ulcerations, bilateral posterior uveitis and retinal vasculitis, skin papules and pustules, and recurrent monoarthritis. Neurologic examination revealed pseudobulbar palsy, slight and asymmetric bilateral pyramidal syndrome, muscle rigidity involving the four limbs, bradykinesia, masked face, and impaired postural reflexes. There was postural tremor in the extremities and myoclonic jerks involving the tongue and face muscles. Magnetic resonance imaging demonstrated small bilateral multifocal hyperintense lesions, with right predilection, involving the periventricular white matter, brain stem and basal ganglia.
CONCLUSIONS:
The Parkinsonian syndrome found in our patient might be due to involvement of both substantia nigra and basal ganglia. This case further emphasizes the wide spectrum of the neurological manifestations of Behcet's disease."
"Neurological: central nervous system (CNS) involvement occurs late in the disease. Memory impairment is the most common CNS manifestation. Impairment of balance, speech and movement can also occur. Thrombosis within the dural venous sinuses may occur. Peripheral nerve involvement is rare.[3]"
"Patients with CNS involvement require the most aggressive treatment, usually with a corticosteroid plus either azathioprine, cyclophosphamide, or a TNF-alpha inhibitor."
***
Parkinsonian syndrome as a neurological manifestation of Behçet's disease. Can J Neurol Sci. 1998 Feb;25(1):82-5.
BACKGROUND:
The central nervous system is often involved in Behcet's disease. Most common are meningoencephalitic and brain stem syndromes. Although basal ganglia involvement is not an uncommon finding on necropsy, there are only single reports on extrapyramidal syndromes-dyskinesia, chorea and Parkinsonism in patients with Behcet's disease.
CASE STUDY:
We report a patient fulfilling the criteria of the International Study Group for Behcet's disease. He had recurrent oral ulcerations, bilateral posterior uveitis and retinal vasculitis, skin papules and pustules, and recurrent monoarthritis. Neurologic examination revealed pseudobulbar palsy, slight and asymmetric bilateral pyramidal syndrome, muscle rigidity involving the four limbs, bradykinesia, masked face, and impaired postural reflexes. There was postural tremor in the extremities and myoclonic jerks involving the tongue and face muscles. Magnetic resonance imaging demonstrated small bilateral multifocal hyperintense lesions, with right predilection, involving the periventricular white matter, brain stem and basal ganglia.
CONCLUSIONS:
The Parkinsonian syndrome found in our patient might be due to involvement of both substantia nigra and basal ganglia. This case further emphasizes the wide spectrum of the neurological manifestations of Behcet's disease."
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