Paraneoplastic Cerebellar Degeneration
What is Paraneoplastic Cerebellar Degeneration?
Paraneoplastic cerebellar degeneration is believed to be the body's immune system's attempt to destroy a tumor resulting in damage to the cerebellum.
Last updated 13 Jul 2009, 09:38 PM
13 Jul 2009, 09:38 PM
Hallo, I'm pharmacist from Sofia, Bulgaria. I'm interested in your case and the therapy of your desease. I'd like to know the full scheme of the therapy with prednisolon that your doctor applied to you. The reason I want that information is because I have one pationt with that diagnosis and doctors here do not want to treat her. It's very pitty but I want to do what I can for her. So if you can, give me also some coordinates (e_mail) of you doctor so he can tell me all about the treatmen (if he agrees).
11 Jun 2009, 01:40 PM
I have had PCD since late 2006. Alert local doctoring from my internist & then a neurologist suspected, then diagnosed, it within a month after I frst sought medical help. I have been treated at/by the Mayo Clinic since then and still work full time. The succesful treatment for me has been 1 gram IV of methylprednisolone at varying intervals. I started with daily & am now monthly. When they experimented with taking me off the steroids, all my symptoms came back with a vengance. My symptoms include: feet are asleep 100% of the time, ataxia with voluntary muscles, myoclonic jerks, loss of appetite, taste changes, balance malfunction, fatigue, weakness, & lethargy. I expect no effect on longevity, but the long-term steroid treatment could have repercussions.
Clinical Trials
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.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
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.
Community Leaders
Expert Questions
Ask a question
Community User List
My daughter began showing symptoms that something was wrong...
Start a Community
Don't See Your Condition On Rareshare?
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
FAQ
Have questions about rareshare?
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Discussion Forum
General Info, perhaps useful
Created by BillyReyn | Last updated 13 Jul 2009, 09:38 PM
Our Communities
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITY
Our Resources
Our rare disease resources include e-books and podcasts
Our Community Leaders
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.