Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 12-23-2020, 11:25 PM #1
MG_Kat33 MG_Kat33 is offline
Junior Member
 
Join Date: Jun 2017
Location: Las Vegas, NV
Posts: 24
5 yr Member
MG_Kat33 MG_Kat33 is offline
Junior Member
 
Join Date: Jun 2017
Location: Las Vegas, NV
Posts: 24
5 yr Member
Book 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?
MG_Kat33 is offline   Reply With QuoteReply With Quote

advertisement
Reply

Tags
city, ocular, surgery, symptoms, thymectomy


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Checking In Debbie D The Stumble Inn 2 04-23-2018 04:56 PM
checking in charlie New Member Introductions 2 07-03-2013 11:29 PM
Hi, just checking in (long) MSacorn The Stumble Inn 3 06-06-2010 01:58 PM
Checking in... Abbie Survivors of Suicide 8 06-01-2008 12:53 PM
just checking in (long) JustWeave The Stumble Inn 5 05-23-2008 04:00 PM


All times are GMT -5. The time now is 06:21 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.