Hi my name is Cathy, and I found fnd by chance just a few days ago. I have been emersed in the information available about it since then.
For the past 15 years I have suffered from dystonic type symtoms over my entire body. Muscle weakness to the point of not being able to move for hours on end any part of my body. Basically being locked in my body with my mind working.
It all started 15 years ago after I had a vestibular neurectomy on my left side. My balance nerve was sectioned in brain surgery. They did this because I had constant vertigo for almost a year and a constant nystagmus in my eyes that affected my vision. I was told other than gentamicin treatment, which sounded like a nightmare, this was my best option. After the surgery I developed a spinal fluid leak that almost killed me, and was placed on a lumbar drain, followed by a second surgery.
Within one month of this operation the dystonic symptoms came. They thought I was having a stroke, I was not. I went to U of M in minnesota and after a week in the hospital said it was not dystonia but a conversion disorder. Ok I thought, go to a psychiatrist and he will figure it out. Only to be told by 3 psychaitrists and countless testing I did not have a conversion disorder, I needed a good neurologist.
I was blessed to find a internist who believed there was something wrong with my brain and started me on Tegretol. So after 2 years in a chair, unable to talk, dsytonic all over, I had my life back again. During the past 15 years I have had times when I became episotic and the medication was increased. About 4 years ago when my potassium bottomed out they started me on sinemet, a neurologist from NY saw me and said I definitely had dystonia. The sinemet worked well, and recently after being sick for three months again the sinemet was increased and again the lights are on, and I am functional again.
My last visit with the neuro stated I could possibly have a conversion disorder again. I felt defeated, back and forth and back and forth. I was so exhausted by it all. Then 2-3 days ago I found this site fnd.hope and I said this is me. I do not have a conversion disorder just like the psychiatrists keep saying, my brain is just not connection right. I have made an appointment to go the the Carrick Brain Center in TX next month. I would like to know if anyone has been there and if it helped if they have. It is very costly, 1000-1200 a day. Minimum 8 day stay. We will have to second mortgage the house. But I need help and answers. Would appreciate any and all help from anyone. Also you can email me privately at email@example.com. Thanks in advance for any help. Also I have been diagnosed with spasmodic dysphonic, high blood pressure, hypokylemia, and paroxysmal dystonia. But I really think my brain is just messed up. God Bless, and pray this finds you well and hopeful. I apologize for the long post, it is a long history. Will try to keep them shorter after this.