Primary Orthostatic Tremor
What is Primary Orthostatic Tremor?
Primary Orthostatic Tremor is a rare disorder characterized by tremors of the legs.
Last updated 20 Feb 2017, 01:08 AM
20 Feb 2017, 01:08 AM
There is also a Facebook Group called 'Primary Orthostatic Tremors' that has a lot of the same people in it. There is a lot of daily chatter about OT, I'm a member of both groups.... Thanks for your reply.
19 Feb 2017, 04:44 AM
It's not very active. Believe the most activity is over at https://www.orthostatictremor.org .
18 Feb 2017, 04:49 AM
I just got an email saying they were going to be updatng this site and wondered if it was still active. I see there has only been one post and that was in 2010!! There is lots of new info, although nothing to help solve our problems, but we need people to get together to make an awareness of OT!
Last updated 23 Jul 2010, 02:59 AM
23 Jul 2010, 02:59 AM
Has anyone had difficulty renewing their Driver's license? I have resorted to using a walker. Recently when I went to renew my Driver's license I was asked why I needed the walker. When I was honest and told the gentleman that I had Orthostatic Tremors he typed it into the computer and told me that he would have to report this to Tallahassee, Florida. This happened in June of 2010. I was told that I would receive a Medical Report form in the mail. I have not yet received it. I found the number online for the Medical Review Board in Tallahassee and then called them. When I spoke with them they told me that they have not made a decision yet whether to send me the medical report form. They said they needed to know if the disease is progressive or not. I know that it is progressive, however, this time I kept my mouth shut. They said they would get back to me that afternoon. Which was July 20. It is now July 22 and still no word. I called again today and left my name, Driver's license number and phone number. Still no call. I did get a 30 day extention on my license on July 20th to try and resolve this matter. I have an appointment with my doctor on August 3, 2010. Hoping they can straighten out this mess if I can't do it on my own. I have a Mother with Alhezimer's Disease that I have been helping care for that lives in another town. I am worried that I will not be able to get around to help out.
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Is Anyone Still Active In This Group?
Created by wendygsd | Last updated 20 Feb 2017, 01:08 AM
Driver's License
Created by sharonmathews | Last updated 23 Jul 2010, 02:59 AM
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