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Originally Posted by tkayewade
I don't have epilepsy but I did have a seizure in April. I am having an emg/ncv tomorrow. Sooooooo not looking forward to this. Heard these are brutal on rsd/crps. Still having awful tremors. I called doctor, and never heard back. Of course. No muscle relaxers tomorrow so I'm sure it will be awful. I'm starting to wonder if I'm crazy. Then yesterday my father in laws gf told me I could walk if I really wanted to. It's like they think I'm an attention whore, pardon my French. Seriously, so now my legs are jellier than usual and I'm just not sure what's up. It started after that battery surgery and never went back to normal. This disease throws me a curve ball everytime I think I've got it close to figured out or at least manageable. anyway, I don't know anymore. I want to scream!!!
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Why oh why do some people have to be real jerks just when you don't need it? Ignore her, she clearly knows nothing about your situation and has no conception of the kind of pain that is possible - lucky her, but she should keep her unhelpful opinions to herself! If you need to let that scream of frustration out, do it to her. Might make you feel a teensy bit better to frighten the pants off her
It must be terrifying, I so hope everything goes well and you can get some answers from this. Try to stand up for yourself while you're in there - don't let the docs and nurses tell you something you know isn't true, or talk you into something you know is a bad idea. I know it can be very difficult to say no or stop to a so-called professional, I still struggle a bit myself but I'm getting better at it. Remember that you are the only one who really knows what's going on with your body...
This leg jellification probably is connected to the SCS wires, it might be that it takes your leg nerves a little while to settle down after the SCS stimulation. Hopefully it is a temporary (long enough though
) problem and something that will pass with time.
I'll be thinking of you! Good luck
Bram.