Hi, I joined here recently. I have not been diagnosed with Epilepsy but I've been referred by my neurologist because of myoclonic jerks, etc that she thought could be seizures but there wasn't activity caught during the day. I usually have it happen around sleep so it's recommended I have a video EEG for a few days to check but I need to be referred by this specialist. I'll be going for that appointment tomorrow. I'm nervous and don't know what to expect. Also what I should share. I have been documenting some stuff. It's hard to keep track of everything. I know he will probably ask me questions. I mostly want to be sure I'm referred for the video EEG cause that's the only way to know if what I'm experiencing is seizure related at all. This really affects my life cause then my sleep is not proper and interrupted and trouble being in control of my body. Any suggestions or comments would be appreciated. How was it for your first appointment with the specialist, if you had one. Had you had tests done beforehand or not? I haven't had seizure activity caught during Sleep deprived EEG and MRI didn't see brain growths but that doesn't necessarily mean it couldn't be seizures. They need to catch the movements on video EEG to see.
First Epilepsy specialist appointment Soon - Epilepsy Society
First Epilepsy specialist appointment Soon
Hi. I am sorry you didn't get a reply before your appt. I have to go to the library for internet and have not been 100% so it's annoying I missed your post. Firstly if you are being offered a video thing, that's brilliant and it would help a lot. Basically detail and more detail is what they need. What can help to log events is just a rough form, can be hand drawn lines, several columns, date, time, what doing in day, what ate, mood , time waking etc
If you are really stressed or concerned about anything I would suggest the various helplines but also the Head and Spine organisation (please google it) they have neurology nurses and will ring you back, so its not a rushed chat.
I hope your appt went okay, but I know it can be very frustrating and not easy to say and ask all you need even when you've got it written down. Please tell us how you got on. I apologise ahead if I can't answer straight away.
Take care
all the best
Thank you so much. I appreciate the reply. Though it was a bit challenging getting there and being by myself, I was able to show a video and my sister talked to him on the phone and I was able to show a test when I was younger that they said I looked like I was blank at times, etc. He was quite patient, considering my phone ran out of power so he offered to charge it with the computer to show him video. Also getting there by bus, etc kind of far, even though I left over 3 hours before, I was a bit late cause I even got lost in the hospital. Lol The staff there are nice so they were helpful.
That was in Toronto, Canada. Not sure whereabouts you are from.
The specialist asked a lot of questions and did some simple tests there, which was good/thorough. I am going to get a video EEG. He said I can be set up there and take it home for a few days and set up video if I feel it going to happen or able to catch something. I think there's also a button I can press I think. I guess this might be better cause it's in my own environment and I can still try to get stuff done in the house or if I can't, then hopefully it can be caught on camera, etc.
Thanks again for the response. I will check out the info you suggested. That could be helpful. I haven't gotten a call back yet to know when it's set up yet so I'll probably try calling them back this week if I don't hear back soon (will be 2 weeks, since the appointment by tomorrow).
Oh, and the camera has infrared or something so I can leave the camera running at night, since that's around when a lot of it happens.
My arm started having jerks at one point when I was there so he was able to witness that kind.
So I think the it's a good place and specialist and now I know better how to get there. Now I just have to have the test and hope they will be able to diagnose correctly, etc. Take care! Also I'd be interested to hear your story if you'd like to share. Or I may be able to find if you have shared already.
You don't have to feel bad about responding late. I understand the struggle. I've been without internet for a while before, etc. 💖
