IM totally confused with this ocular myasthenia. Totally confused, baffled, bewildered, but most of all, , Im just so ****** off and always angry, I will never give in and admit it has taken the best of me.
Ive been resting my eyes with incredible patience. I avoid computers, I refuse to read anything, or concentrate on anything the past week, and since I dont work much anymore, and have noone who needs me for anything, I lay down and shut my eyes every day at 4pm, figuring the rest and shuteye will help my nights since the muscles of the eyes are just tired.
Does not matter, and this is pissing me off even more.
Every night, no matter what I do, the eyes feel like they are going to malfunction, just plain tired eyes, and when I struggle, I get massive headaches, so I take the Mestinon before I get the pain.
It just ticks me off so much that no matter what I do, this OM wins.
I refuse to accept this. Maybe my neuro, and the neuro before him, and the neuro opthamalogist, and my opthamalogist, all misdiagnosed me. Well, I like to think like that.
If it wasnt for Mestinon, I would really be miserable

IM not sure whats worse anymore, the disease or the frustration I have because of it. (I know its all tied in, but when I had a hole bunch of surgeries for my back or my melanoma, there was always a light at the end of the tunnel)

My anger will never cease, and my will to outwit this crappy disease will never let me relax.
My neuro wrote me the prescription for the immunoglobulin A level test 2 weeks ago, he wants me to get IVIG, almost insisted on setting it up when I was in his office.
Not yet, Im not ready to trust any hospital and blood/plasma exchanges, no matter how safe it is, cause the odds of me getting this crappy disease is about the same as me getting another crappy disease from someone elses problem blood.
Yeah, Im angry, cant release it.

kathy i hope you decide to go and feel ok, no double vision problems.

btw, I dont come here too often anymore, only because I am so pessimistic I feel its bad for the members of a board like this.
Im afraid Id get banned for life the way I really feel.