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...
I've been reading on this site for some time & I finally decided it is time to join. Since May of 2015 I've been dealing with double vision when I look to my left, ptosis & blurry vision when I am extremely fatigued which is all of the time. I went to a Neuro Opthalmologist & he put me on mestinon for a month but once I was at full dose (1 tablet 60mg 3x per day) my symptoms were worse plus I had uncontrollable diarrhea. At that point he took me off of the mestinon. I had the AChR blood work which came back negative and he also sent me for an orbital MRI to be sure it's nothing to do with my muscles. He tried the ice pack test but there was not a significant change hence the orbital MRI. Now he is sending me to my Neurologist (diagnosis of seizures in 2014) & she is to schedule me for an EMG. Praise God I live where we actually have a clinic dedicated to myasthenia gravis so that is where I will be going for my EMG.
Today I went to see my Neurologist for my seizures & of course my left eye was almost all the way shut. This was the first time she's ever seen me like this. I told her I was praying I didn't have myasthenia gravis & she told me I hate to tell you but I'm pretty sure you do! Devastating but what I've suspected. Now to get a true diagnosis & start medication. Not the journey I would have chosen, as all of you but you all have inspired me!!
Thank you~
Today I went to see my Neurologist for my seizures & of course my left eye was almost all the way shut. This was the first time she's ever seen me like this. I told her I was praying I didn't have myasthenia gravis & she told me I hate to tell you but I'm pretty sure you do! Devastating but what I've suspected. Now to get a true diagnosis & start medication. Not the journey I would have chosen, as all of you but you all have inspired me!!
Thank you~
MG can be difficult to diagnose and distinguish from other conditions, so persist with the tests as it is not good to be treated for the wrong diagnosis.
Good Luck
Russ
Thank you! I feel like I already know each one of you personally since I have been reading here for a while.
I'm ready to move forward with the next test but I have to admit I am apprehensive as well. I hear the EMG can be painful.