| I am lucky, and I am unlucky. I am lucky because I have a lot of support. I
am unlucky because I have OT. I've had it for about 10 years, and I'm
currently 81 years old.
Initially, in 1993, I visited my family internist complaining about leg
tremors. He scheduled a spinal MRI, and then referred me to a neurologist
in the Red Bank, NJ, area, Dr. Philip Ilaria. This neurologist assured me
that 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 Neurology
who practices at Riverview Medical Center. Dr. Pertchik continues to treat
me. Between 1995 and 1997 we tried Zoloft, Inderal, Mysoline, and
Neptazane, all with unsatisfactory results. In 1997 I visited a neurologist in Jupiter, FL, Dr. Sonia Neuz, who recommended balance therapy and Tai Chi. I did not follow her recommendations. She felt I had "essential tremors" and said that since this was not a killer disease, not much research has been done to find a cure. 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 Cosgrove at Massachusetts General Hospital in Boston. Dr. Cosgrove examined me and subsequently presented my case at his Movement Disorders Conference, where it was agreed that I had OT. He considered, but did not recommend (due to my 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 Johnson Hospital in New Brunswick, NJ. He had been recommended to me by Dr. Cosgrove and was closer to my home. Dr. Lehman confirmed Dr. Cosgrove's diagnosis. I returned to Dr. Pertchik in late 1997 and he prescribed Clonazepam. I discontinued this drug in 1998. I started Depacote, but discontinued it after it proved ineffective. I then learned about Dr. Mitchell Brin, Associate Professor of Neurology and Director of the Movement Disorders Clinic at Mt. Sinai Hospital in New York City. He and his staff all but drooled when they saw a real, live OT case--we are so rare. He had me see a Dr. MacKinnon, a physiologist, who measured my tremors. All of these people were doing the same thing my home neurologist was doing: experimenting. We tried Clonazepan again, Mysoline again, and Propanalol. Many of the medications not only had no effect on controlling the tremors but also had adverse side effects such as acid stomach, depression, grogginess, fatigue, and light-headedness, which led to my discontinuing them. In recent years I have been using a stool in the kitchen when I cook and 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 go away. My husband has been most supportive. He has been my legs (and brains!) most of the time. But then, there are the times he just doesn't understand because he doesn't have OT. And I guess I was lucky in another way, too: I was never misdiagnosed. I am currently on Neurontin, Propanalol, and Topomax--a new one. All we can do is hope one of these drugs, or a combination of them, will help or that one of the drug firms will come up with a new drug that works--maybe this Topomax? I, too, would love to hear from others of you out there with this same mortifying, humiliating affliction. Good luck to all of you. Eleanor NJ EleanorWTh@aol.com |