| I am lucky, and I am unlucky. I am lucky because I have a lot of support. Iam unlucky because I have OT. I've had it for about 10 years, and I'mcurrently 81 years old. Initially, in 1993, I visited my family internist complaining about legtremors. He scheduled a spinal MRI, and then referred me to a neurologistin the Red Bank, NJ, area, Dr. Philip Ilaria. This neurologist assured methat I did not have Parkinson's Disease and prescribed Klonopin and Sinemet.Neither helped. I then went to another neurologist, also in Red Bank, Dr.Alan Pertchik, a Diplomat of the American Board of Psychiatry and Neurologywho practices at Riverview Medical Center. Dr. Pertchik continues to treatme. Between 1995 and 1997 we tried Zoloft, Inderal, Mysoline, andNeptazane, all with unsatisfactory results. In 1997 I visited a neurologist in Jupiter, FL, Dr. Sonia Neuz, whorecommended balance therapy and Tai Chi. I did not follow herrecommendations. She felt I had "essential tremors" and said that sincethis was not a killer disease, not much research has been done to find acure. Also in 1997 I visited Dr. Scherazad Musaphir at Lahey Clinic in Boston, MA.She had no medications to prescribe but referred me to Dr. G. Rees Cosgroveat Massachusetts General Hospital in Boston. Dr. Cosgrove examined me andsubsequently presented my case at his Movement Disorders Conference, whereit was agreed that I had OT. He considered, but did not recommend (due tomy age), ablative surgery, and suggested resuming Mysoline and Clonazepam,which I did. I then went to Dr. Richard Lehman, a neurologist at the Robert Woods JohnsonHospital in New Brunswick, NJ. He had been recommended to me by Dr.Cosgrove and was closer to my home. Dr. Lehman confirmed Dr. Cosgrove'sdiagnosis. I returned to Dr. Pertchik in late 1997 and he prescribedClonazepam. I discontinued this drug in 1998. I started Depacote, butdiscontinued it after it proved ineffective. I then learned about Dr. Mitchell Brin, Associate Professor of Neurology andDirector of the Movement Disorders Clinic at Mt. Sinai Hospital in New YorkCity. He and his staff all but drooled when they saw a real, live OTcase--we are so rare. He had me see a Dr. MacKinnon, a physiologist, whomeasured my tremors. All of these people were doing the same thing my homeneurologist was doing: experimenting. We tried Clonazepan again, Mysolineagain, and Propanalol. Many of the medications not only had no effect on controlling the tremorsbut also had adverse side effects such as acid stomach, depression,grogginess, fatigue, and light-headedness, which led to my discontinuingthem. In recent years I have been using a stool in the kitchen when I cookand I have a bench and a bar in my shower. You can see we haven't been just sitting around waiting for this curse to goaway. My husband has been most supportive. He has been my legs (andbrains!) most of the time. But then, there are the times he just doesn'tunderstand because he doesn't have OT. And I guess I was lucky in anotherway, too: I was never misdiagnosed. I am currently on Neurontin, Propanalol, and Topomax--a new one. All wecan do is hope one of these drugs, or a combination of them, will help orthat one of the drug firms will come up with a new drug that works--maybethis Topomax? I, too, would love to hear from others of you out there with this samemortifying, humiliating affliction. Good luck to all of you. Eleanor NJ EleanorWTh@aol.com |