Hello, checking in after a long while 🙂
 

Hi forum :) It's been a while, thought I'd check in and see what's shaking... Besides our weak arms and legs.

Updates from my end: It took me 2 years after moving to a new city to both find a specialist that would recommend surgery and get it done. They tried me on azathioprine, which caused pretty bad negative reactions on low doses, so had to be taken off and kept on daily 10mg of prednisone. I did manage to get a transsternal thymectomy on 9/16/19 at USC Keck Hospital. I'm not sure it will help since it took so long to be diagnosed and then several years from diagnosis to surgery, but I got through it pretty easily and am thankful for no complications.

Sadly, it hasn't seemed to really help too much. I am currently on 9mg prednisone, 60mg pyridostignine 3x a day, and am trying to wean pred slowly, but I have ocular symptoms every morning for a few hours.

I have almost no choice of neurologist due to my crappy insurance coverage and the lack of specialists in my city. My current is associated with the local MDA clinic, but they won't prescribe anything other than azathioprine for a steroid sparing agent.

So I guess I'm wondering two things:

1. Anyone take more than a year to get good outcomes from a thymectomy?
2. Can anything aside from "deal with it" or an eye patch be done for ocular symptoms?