Candid Perspectives: Long Road to DBS Life & the Questions of Living with a DisabilityBy Ramona Edwards
In March of 2005 I began to have some strange twitching in one arm, only noticeable as I was falling asleep at night. Rather than going away, it began to get worse, though, and soon it was apparent during the day, also. My local neurologist, who I was seeing for Restless Leg Syndrome and various other neurological issues, thought I had MS, so she referred me to the MS Clinic at Vanderbilt. As that and other illnesses were ruled out, the twitching continued to worsen and soon it had spread to one of my legs. My neurologist was quite concerned and wanted to send me to Mayo, but after doing some research I declined, due to financial concerns. So determined was she to help me find a diagnosis, though, that she set me up with a doctor she considered to be the top Movement Disorder Specialist in the country - Dr. Xyz* at Baylor. Frustrated and discouraged, we returned home.. I continued seeing a MDS (Dr. H*) at Vanderbilt over the next few months, and he eventually told me that I had Conversion Disorder. The reasoning behind this diagnosis was that my symptoms had changed over the months he was seeing me. When I asked him why he was giving me a similar diagnosis as Dr. Xyz had, yet telling me the exact opposite regarding my symptoms (his diagnosis was based on the fact that my symptoms had changed, while Dr. Xyz assured me they would not get worse precisely because they were psychogenic), he had no real answer for me.. He was apologetic and compassionate, but my husband and I got the feeling that he had no idea what was going on, thus his determination that I had Conversion Disorder. During that appointment, as the doctor watched my shoulders spasm and draw in towards each other, he declared that I had Dystonia. He went on to distinguish between the different movement disorders and to explain why it was clear to him that my movements were dystonic. It was when he said, "Dystonia is not caused by stress" that I truly wanted to jump up and hug this doctor! He assured me that Dystonia was exacerbated by stress, but it was not caused by it. This doctor was not aware of my previous diagnoses of Psychogenic Myoclonus and Conversion Disorder, yet he was very adamant in his statements about Dystonia not being caused by stress. As we finished the memory section of the test, the technician informed me that she had never gotten that far in the test with a patient before. I thought that meant I had done well, but I could not be certain until I heard from the neurosurgery nurse when she called to give me the decision of the DBS committee. Their opinion was that I was a good candidate for Deep Brain Stimulation surgery, so, out of curiosity, I asked the nurse how I had done on the neuropsychiatry test. She said, "You could not have passed that test with any more flying colors." Ha! So much for the psychogenic and conversion disorder diagnoses! I have to admit that I took solace in the knowledge that the doctors who approved me for brain surgery were confident that the diagnosis of Dystonia was not psychological in origin...
Candid guest writer Ramona Edwards has been married to her best friend for 31 years and they have 11 children. Her Dystonia symptoms began in March of 2005, at the age of 43. She was officially diagnosed with Generalized Dystonia in May of 2006 and underwent Deep Brain Stimulation surgery in April of 2007.
|