Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Got a Great Research Idea? ‘All of Us’ Wants to Hear It!
January 18, 2018
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
About 3 months following the onset of Parsonage-Turner Syndrome, I developed numbness in my lower body. Gradually over the course of 8 weeks, about 90% of the sensation in my lower body returned. The Parsonage-Turner also damaged my esophagus and one vocal cord. It's been about 8 years and I continue to have the numbness and tingling in my feet. Is it possible that the Parsonage-Turner is causing the persistent neuropathy in my lower body? See answer
I have been recovering from Parsonage Turner syndrome for years. I still have some pain, the fatigue is still with me and my quality of life is compromised. Can this develop into something else? Also, is it normal that I still have fatigue after 5 plus years? See answer