Hi T. Woke up in the middle of
the night with my neck twisting and locking up again. These spasms are
the worst. I yelled outloud and while my head was locked sideways
(accessory nerve damage-cranial nerve 11) I told John to get the camera.
By the time he had it and the lights all on he realized I had already gone back
to sleep. LOL hahahaha "well, shiver me timbers...ach
ack ack"
When I got up it started up again but the worst of it was my left eye. It was way at the end of the eye so you could see a bunch more than you should of the whites of my eye. To me it felt like my eye was loose and the muscle was just bouncing the eye around. Believe it or not the feeling from my brainstem to the front of my neck was WAY worse then worrying about my stupid eye. I get so mad my neck and jaw and head are going to get stuck that way and I won't be able to straighten it up and I'll have cervical dystonia forever and be deformed. (with tonus)
It's amazing what nerves can do to the body and because these control neck muscles it's a real pain in the neck. Get it? hahahaha I made another funny. I shall have to have a long chat with my neurologist after I see the cardiologist about my carotid artery.
My question has always been WHY this damage to my nerves? I think I'll start getting some answers after I see the opthamologist. Real answers. He can do an orbital MRI and get a nice 3D close up shot. I'm really excited about that. Is it really lupus damaging the myelin sheath? I personally don't think so. I've got that pain and squishy feeling right in my brainstem on the left and I believe herein lies my problems. There's something going on in there and it's affected all the cranial nerves which is why I have intermittent problems with so many of them. Mainly, 5, 7 and 11. I think the carotid artery is involved but not like they think it is. I do not think I have a heart problem of any kind.
Sometimes a hunch is right. Now to get the docs to listen and have the right tests. I'm getting somewhere finally. Yeeee Haaaaa!
When I got up it started up again but the worst of it was my left eye. It was way at the end of the eye so you could see a bunch more than you should of the whites of my eye. To me it felt like my eye was loose and the muscle was just bouncing the eye around. Believe it or not the feeling from my brainstem to the front of my neck was WAY worse then worrying about my stupid eye. I get so mad my neck and jaw and head are going to get stuck that way and I won't be able to straighten it up and I'll have cervical dystonia forever and be deformed. (with tonus)
It's amazing what nerves can do to the body and because these control neck muscles it's a real pain in the neck. Get it? hahahaha I made another funny. I shall have to have a long chat with my neurologist after I see the cardiologist about my carotid artery.
My question has always been WHY this damage to my nerves? I think I'll start getting some answers after I see the opthamologist. Real answers. He can do an orbital MRI and get a nice 3D close up shot. I'm really excited about that. Is it really lupus damaging the myelin sheath? I personally don't think so. I've got that pain and squishy feeling right in my brainstem on the left and I believe herein lies my problems. There's something going on in there and it's affected all the cranial nerves which is why I have intermittent problems with so many of them. Mainly, 5, 7 and 11. I think the carotid artery is involved but not like they think it is. I do not think I have a heart problem of any kind.
Sometimes a hunch is right. Now to get the docs to listen and have the right tests. I'm getting somewhere finally. Yeeee Haaaaa!
"We delight
in the beauty of the butterfly, but rarely admit the changes it has gone
through to achieve that beauty."
Maya, Angelou, US author & poet
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