I have been reading your website for at least a year trying to convince my doctors that this sounded like what I might have. I have probably had these symptoms for at least six years and have seen five doctors before being diagnosed. My Neurologist in Tulsa had never heard of this condition. As so many others, I had had all of the MRI's and blood work done and still no diagnosis. Finally, my neurologist in Tulsa, who is a fine doctor, but just was at a lost, referred me to Baylor College of Medicine in Houston, Texas where I was examined by Dr.Joseph Jankovic. He is the founder and director of the Parkinson's Disease and Movement Disorder Center. After reading my file, which included my mention of your website and the similarities to my symptoms, he very quickly determined I indeed had OT. Their center is a research and teaching facility and they video taped and interviewed me when they used the machine to test the frequency of the tremor.
I would encourage anyone who thinks they may have this to consider visiting this center if it is near where they live. We were seen at our appointment time and all of my questions were answered. I am taking Clonazepam twice daily and have been on this medication for about a month. At first, it made me very drowsy and dopey feeling. That seems to have left for the most part and I have noticed about 50% improvement in my tremors. I just turned 50 two days ago. I worry about taking such stong medications for years. I forgot to ask the doctor about the progression of this disease. Does it always continue to worsen? My progression has been very subtle and slow.
I am scheduled to return for a follow up visit in December. I was so grateful when I first found your website and read about others who were experiencing similar difficulties in social situations. I am glad I finally have a diagnosis, and find your website helpful. Hopefully we can learn from one another. You have my permission to share this with others if you think it is helpful.
- Maggie Tulsa, OK