Just a bit of background information:

Current Diagnosis:
Epilepsy (Right Central Temporal, Frontal and Parietal Lobe)
Trigeminal Neuralgia -Right Side
Mild Anemia - Said to be from severe case of Aseptic Meningitis as an infant
Sciatica -From coccyx (tailbone) fracture in 1997 during seizure, managed with once per year cortisone injections.
Migraines and Headaches (Seizure related)
Low Blood Sugar (average ~90/50 every day)


Having said all of that, I just keep getting this feeling deep down I am being treated for the wrong thing. I understand with one type of seizure I have (from the Parietal Lobe) I can have tingling and numbness sensations along with shock-like pain. The thing is, my numbness doesn't fit the descriptions I can find.

Any area of my body can go numb; my fingers, toes, face, legs, buttocks, back, breasts, and most recently my neck (it felt really bizarre), and so on. This happens 10-20 times per day and lasts 10-30 minutes.

I have these shocks, I know the larger 'episodes' are probably associated with my seizures, but the others are small shocks that make random body parts jump and jerk and twitch. Like my leg will shoot up in the air, or my arm, foot, etc. It's like someone startles you, except it happens for no reason.

I also have muscle twitches 15 times per day, the areas are small - about the size of a playing card and I can visually see and physically feel (by touch and in the area) my skin and muscles moving. I had the staff at the epilepsy center witness this and it lasted for two hours. It's normally a 5-10 minute event, this was a record for me. It happens in random places like the others, my hands, face, lips, legs, etc. It does not hurt, and it also doesn't hurt when I have the numbness (that's obvious).

Another weird thing is my feet hurt, it feels like I dropped something on both of them when I walk and I don't know why. This has been going on for a few months and seems to happen several times a day. It's a weird feeling to describe and I can't find anything online, it always leads me to MS. But as usual, I don't fit the full description.

I keep growing tired because the smallest tasks exhaust me and my body hurts everywhere just from cleaning. I know my seizures wear me down, but these things have been pretty new. I went from one GM seizure a year to constantly having small seizures and these weird attacks.

My hand got this cramp like a charlie horse and it looked all mangled up and boy did it hurt. It's all frustrating because I am half tempted to keep dealing with it than to throw myself back into a diagnosis limbo. It could be something or could be nothing, but whatever it is, I just wanted to get it off of my chest.

Sometimes I feel like I am at war with my own body and recently, it feels like my body is getting the best of me. Hopefully in less than 2 weeks my VEEG results will give me something to go on, or explain why I feel this way. I'm tired of being tired.

Anyway, if anyone has heard of any of these symptoms or whatever you'd like to call them - feel free to throw me some tips. I'd like to at least figure out how to avoid the numbness, when it hits my legs I can't do much since I will fall.

Thanks for listening to me blab, I feel better getting that out.

-Ellie

Ellie - I would trust your instincts.
If you feel is is something new or different, then more testing should happen.
You don't want to let anything new go on for too long without treatment or the wrong treatment.
{ I know it's all a pain though- testing & appts}

I hope someone sees this and has some better ideas for you.
Jo

awwhhh Ellie. I hope the VEEG has some big answers for you that make sense and are easily controlled . if not...how about what you suggested to me a bit ago , a referal to see a diffrent doc to see what they say.?
When I first got my shakey jaw shiver fits I would hold my jaw closed tight with my hands and the shakey would travel to my arm and stuff it didnt hurt or anything . now I just let my crazy jaw do whatever the Doc said to just let it miss fire. anyways I wanted you to know I am thinking of ya and really hope you get some answers/solutions soon... dont settle for anything less!!
Best regards... and prayers for you too.
Burntmarshmallow