← Return to Parsonage turner syndrome *

Discussion

Parsonage turner syndrome *

Brain & Nervous System | Last Active: Aug 4 7:56am | Replies (239)
Comment receiving replies
@arlenej

My husband has been dealing with Brachial Plexus neuropathy for over a year and yesterday was the first time we've heard of Parsonage-Turner Syndrome from our physician at USF in Tampa. What do you know about this syndrome - what can be done for it - where is the best place to receive treatment for this rare disease?

Jump to this post

Replies to "My husband has been dealing with Brachial Plexus neuropathy for over a year and yesterday was..."
Colleen Young, Connect Director | @colleenyoung | Jan 18, 2018

Hi Arlene, welcome to Connect. I moved your message to an existing discussion group about Parsonage Turner Syndrome so that you can meet others who are sharing their experiences with this condition and where they are treated. Click VIEW & REPLY at the bottom of the email notification to go to the discussion and read the past messages, where you'll get to meet @andylevine @confused1955 and @adriennes.
@johnbishop also shares this great resource about PTS to get you started in your quest for more information
The National Organizations for Rare Disorders: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/
Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

Did you doctor at USF recommend a specialist in the area?

VIEW AND REPLY
arlenej | @arlenej | Jan 18, 2018

No, she did not even mention any specialists in the area. She referred to another doctor at USF for a second opinion - his first available appointment is July 5th. Can you recommend someone in our area? Please and Thank You.

VIEW AND REPLY