Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

dump crazy doctor

drakeford1968
drakeford1968
Hello Guy
I truly believe my Dr is confused. He believe that he can take me off prednisone or get me low as .5 mg. Somehow I spent a few days in ICU and few more day in the hospital. Before this I told him it wasn't going to work. So now what. I think he is totally lost. I can't get IVIG until I'm in crisis. Sad it all about money.
deleted_user
deleted_user
In my opinion, if you have lost confidence in a doctor, it's time to seek a second opinion. Is your dr an MG specialist? If not, is there one in your area?
drakeford1968
drakeford1968
Yes he's a specialist but hard headed.
deleted_user
deleted_user
It cannot hurt to see someone else.
Bamboolilly
Bamboolilly
You don't have to be in crisis for ivig. Please see another dr. I'm working on neuro #3. It is so frustrating for you I'm sure. They are supposed to know more than is right ?
Be well.
RosieSoaring
RosieSoaring
Hi Drakeford! I am SO sorry!!! Is he trying to take you of Prednisone cold turkey?!

Maybe someone here can help you get a second opinon. Crimsonenn, bweeds or krbunn might know of other MG specialists in your general area.

How are you doing now? 'Hoping for better days ahead for you!
Rosie
Thirteenblessings
Thirteenblessings
Hi Drakeford, I am sorry you are going through this. I would see if there is some kind of patient advocate that can help you. I wonder also if bweeds would have a suggestion of who can help you if you are being discrimated against. I know what that feels like, not for insurance reasons but for Mental Health reasons and I know how awful it feels and how helpless you must feel. I am so sorry. I know there is a way. Your state must have someone asigned to help people that are not being treated right. I just don't know who it would be. Someone will answer Drakeford and someone will help you, they just have to. Take care, if I find anything I will let you know, ok? love, carla