Hi Carly,

How did things go for you? I hope the Dr. found out what was going on with you. I used to go to a private school not far from Philly back in the late 1970's.
The school was in Berwyn, PA. I loved taking the train to Philly and NYC when I was there. Here's wishing You Well and May God Bless You!

Sue

"Working diagnosis" of Focal Dystonia. Could be focal epilepsy causing the dystonia, she didn't rule that out yet because I have to get an EEG to find that out.

I also have to get an MRI of C-spine to rule out anything going on there, as the EMG showed degenerative changes there. Massive headache after EMG, but what sucks is the EMG couldn't differentiate between the existing nerve damage from my spinal problems and anything new. The hand came up normal of course, so I showed her the videos I made and she was happy I made them so she could see for herself. The doctor was great, really caring and thorough. She was very concerned about the neck spasm thing and the flashing in my eyes. She did say that with my chronically high C-reactive protein, I am already in an inflammatory state, so any little damage or irritation could just cause a very extreme response. She wanted to do some more research on that and ask a couple of rheumatologists about it, get their perpective as to a. why it's so high all the time and b. if that could be causing these symptoms.

So I will be scheduling the EEG and MRI as soon as I can and keep you posted!

I lived in Philly up until 3 years ago, but in NE Philly (sort of like a suburb). Now I'm just over the Walt Whitman Bridge, sort of across the river from Center City Philly. Where do you live now Sue?

Hi Carly,

Check your private messages.

Sue

Update- twitching is no longer unilateral. On Friday it started in my face and neck and on Saturday, my right side (mostly thumb).

I also am having trouble with if I get startled or really upset, my whole body feels like it's buzzing, like there is an electrical current running through it. Like I fell asleep during the football game and my husband shouted out because of something and I woke up startled and my whole body was just vibrating. Not to the eye, but I could feel it. Freaky.

My final labs came back and my b12/folate was fine and my heavy metal screen was negative, well....my arsenic was 6 but that was "acceptable" and is being blamed on having public water from deep wells. Guess Brita doesn't work that well on Arsenic. That or the ice tea I drink a lot (WaWa or Turkey Hill brands) doesn't filter their water or something.

I had my c-spine MRI on Thursday so I should hear something tomorrow about it and my EEG is coming up on this Wed.

Update:

EEG negative, MRI negative.

Official diagnosis of Multifocal Dystonia. Starting on Sinemet and scheduled for Botox.

Moving on over to the movement disorders forum!

Thanks for all the help.

njmama09,

It has been nice to have you with us. All ways remember to keep us up to date in your situation. Our thoughts and prayers are with you.

Darlene

I have been seaching for answeres but have fallen short of getting them. My Daughter of eleven years old had what looked like a siezure. She was in the floor with her body drawn up and her arms were straightened out to were here hands were by here knees and here legs folded up to here chest and then staightened out. She was so tens that I could not move here arms or legs. Her mouth is open and here eyes are dialated to a piont to were you can only see white of eyes and pupils. Then she sharts to shake, but she is still stiff as a board. It takes about 1 to 2 miniutes for the fits to wear off, and then she makes sounds like she is trying to talk. and her body falls limp.

with in a few more seconds she is up and walking again. NORMAL



She says that she feels a vibration like a cell phone on vibrate start in her toes sometimes on the left and sometimes on the right and it works its way up the side of her body and that side goes numb, then it starts going down the other side of her body. What I have seen is that when it starts in her foot she panics and looses feeling in the side it startes on and her body draws up and she hits the floor. But she says she can remember everything and describes it to me after it is over, what were it started when she fell and what everyone around her was saying. She also says that she can see use but we are blurry while it is happening.


She has had three so far, two bad ones while awake and one while asleep,(that one woke her up). She has had an MRI that docs said looked good, An EEG that they said had siezure activity, and one more for a better look from a child Nuero doc, that one is schedualed for in 30 days.


My question is does anyone know of these symptoms or does any one have a clue as to what type of siezures she is haveing. I need help so I can help her...
Thanks ,Jabay