Neurological Centers, Movement Disorder Depts and Neuros

[Dwight Kraai]

Following are some thought concerning above subject. Jolanson,s recent post has got me going. It is truly amazing that the UCLA neurological department has only one OT patient. Could that be that they have been misdiagnosing previous OT patients?

If I had my choice, I would go to amovement disorder center that has a significant number of patients. The next time I want to be examined I will probably go to Mayo. Dr. Matsumoto has been very cooperative in being willing to work with and communicate with our OT group. He also stated that they have 148 patient files(I do not know if these are active). Previously I checked with Dr., Russotto who is at the movement disorder department at Washington Univ. Medical center. They have 10 Neuros. and share information with each other. He told me that they have 10 active OT patient files Other good selections would be either Dr. Brown or Dr. Bain in London. Both have written articles about OT. In one report Dr. Brown refferenced 41 patients. I do not know how many OT patient files Columbia Medical Center in New York has. Several posts have referenced going there. Perhaps one of you could get that information. Certainly where on goes will depend on their financial and insurance conditions as well as their location. You can guess that my recommendation is to if at all possible go to a Neurological Movement Dept. that has a significant number of patients. There are such few of us that the development of a critical mass or number of patients is important for the center to make a proper diagnosis and medication recommendations.

Most GP.s know nothing or little about OT. At least my GP was smart enough to receommend that I go to a Neuro. I did that, and the Neuro gave me OT diagnosis in about 15 minutes. I needed to stop going to him beccause he moved. The next Neuro asked me if the problem was in my right or my left arm!!!!!. He further told me not to ask questions. It was his job to ask the questions and mine to answer. Needless to say I only went to him once. My next neuro was more conversent, gave me a bunch of tests, including an MRI all of which showed nothing. I asked him how many OT patients he had. He said 14. I told him that that is amaizing and that a summary report of these would be very beneficial for our OT forum. He was not inclined to proceed down that line. This is in Miami Beach, and I very much doubt that he was being truthfull with me. Again I will no longer go to him. The bottom line, as most of you know, Individual Neuros know little about OT. If we are lucky they make a diaganos of OT, go their book, look up what medications are typically perscribed for OT, consider the medications we are taking and then pick one. Basically random medication. (I hope that those reading this do not take my attitude as being pessimistic).

A good goal for us is to get Neuros to communicate with Movement Disorder Centers, especially those with significant number of patients, and to get the movement disorder centers to communicat with each other.

I recommend that all of us ask our Neuro how many patients they have. If one goes to Movement Disorder center, also ask how many OT patients they have.

Dwight Kraai

[jolarson]

When I was diagnosed at UCLA one year ago I asked all the neurologists that examined me if they had any other patients there at the hospital who had POT. I was told by the several neurologists that they had one or two at the different schools they had worked at before coming to UCLA. But as of now I am the only patient. Since this is a disease that is often misdiagnosed, such as what happened to me (8 different doctors before UCLA) it is difficult and frustrating to find the right place where there are quite a few patients with our disability. I felt I was lucky to find doctors who at least knew something about the disease even though not having any patients at this time. That is why the word needs to get out by doctors publishing papers etc. in reference materials that they receive. Of course in a perfect world I would like to go somewhere close by where I live where doctors have many patients with POT but simple logistics will not allow me to travel to Mayo, etc. I am trying to get the word out about UCLA to those who live in Southern California to push the doctors there to do more research or at least get the word out to the new students. I was filmed and spoke before some students and am hoping it will be shown to future students, not just neurologists but GP's who don't have a clue!

[irish4411]

I just returned from UCLA on Friday, July 25. I was told that I was only the 3rd patient they have seen with OT. It was such a relief for me to finally know what was wrong with me. I have been having symptoms for about 5 years now and have been to several doctors and 2 neurologists before being referred to UCLA. I was first referred to Mayo in Minnesota by my neurologist but was turned down, which is how I ended up at UCLA. I live in Las Vegas and work in a major casino. The nature of my job requires me to be on my feet for 8 hours with three 30 minute breaks. I'm often required to stand in one place for 2 hours at a time. You can image the torture I feel almost daily, searching for anything to offer support without being noticed. I have been taking primidone and inderal for over 1 year with little help. (my neurologist thought I had ET) UCLA has now prescribed Clonazepam. Hopefully some relief is in sight.

[jolarson]

Susan, I think your tried to personal email me but I did not receive it. All I received was my original post. I am anxious to share our experiences at UCLA, the doctors, tests, etc. The doctor that you saw was not one that I have seen. It probably is against this boards rules but my email address is jolarson@cox.net. So please try again or if you want just post on the board and we can discuss what somewhat knowledge we received besides the joy of finding a name to what we are all going through.