@kel2 Your mom is so lucky to have you helping her. There are a couple of things you can check out. Find a good university medical school/hospital or comprehensive medical center. Call and explain the problem and say that your mom needs help. That’s what I had to do. I got an autoimmune neurological disease and the doctors here had no idea what it was or what to do. My husband called the university medical center and asked for help. They gave me an appointment with a wonderful doctor whom i still see.
You can also try the Mayo Clinic Care Network, which has hospitals in many states.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/
Will you stay in touch?
(I’ll need to fix the link on the Mayo Clinic Care Network. I’m sorry)

Hi @kel2, @becsbuddy gave you some good resources to get started on finding a Parsonage Turner Syndrome specialist. I moved your message to this existing discussion group:
- Parsonage turner syndrome * https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I did this so you can more easily connect with fellow PTS members like @macker4635 @stacy88 @jjspokane61 @patrick17 @andylevine @kgoodwin9 @jjspokane61 @macker4635 @smf @scionmissy, share experiences and get tips on finding a good specialist.