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UnicornSammi

677d

I think I have non epileptic seizures...I went to my neurologist and did a eeg and a mri...Everything came back normal. what's the next step I should take?

Top reply
    • AZblue

      630d

      I've been through that I kept fighting and would track my episodes as much as possible on paper to take with me but by far the most helpful was getting a video of them to show and continuing to keep pressing it I was told it was just anxiety and attention seeking for many many years it was actually my therapist and mental health team that helped me the most with showing that it's not anxiety or attention seeking eventually I was referred for an EMU (epilepsy Monitoring unit) for a short stay and it was confirmed to be PNES the only true way to diagnose is an EMU stay where they have the EEG hooked up but also are watching through video so they can see when it happens 1. track the best you can dates times feelings before and after doing this can help you spot what might be triggers as well 2. If you can video it and save it to show to your doctor along with the notes from tracking 3. If they reccomend EMU stay go with it if they don't listen keep pushing don't let yourself be silenced This is what I had to do for yrs to finally get diagnosed

    • AZblue

      630d

      I've been through that I kept fighting and would track my episodes as much as possible on paper to take with me but by far the most helpful was getting a video of them to show and continuing to keep pressing it I was told it was just anxiety and attention seeking for many many years it was actually my therapist and mental health team that helped me the most with showing that it's not anxiety or attention seeking eventually I was referred for an EMU (epilepsy Monitoring unit) for a short stay and it was confirmed to be PNES the only true way to diagnose is an EMU stay where they have the EEG hooked up but also are watching through video so they can see when it happens 1. track the best you can dates times feelings before and after doing this can help you spot what might be triggers as well 2. If you can video it and save it to show to your doctor along with the notes from tracking 3. If they reccomend EMU stay go with it if they don't listen keep pushing don't let yourself be silenced This is what I had to do for yrs to finally get diagnosed

    • zebra2022

      673d

      is there a specific trigger than brings on these seizures?

    • PicklesTheCat

      677d

      Some doctors don't know what PNES is so maybe bring them some information on the condition and why you belive you might have it. If not you can also try finding a seccond opinion.

    • UnicornSammi

      677d

      they said everything was normal.

    • Amadeus17

      677d

      Did your neurologist give you any diagnoses or did they just say it's normal? I know that for pnes a part of diagnosis is experiencing seizures but having a normal eeg. If you have psychiatric conditions as well that your neurologist is aware of, I'm not sure why you wouldn't get a PNES diagnosis. All you can really do now I guess is just talk with your neurologist when you can and advocate that you are experiencing things still even tho tests come back normal. Sorry I can't be more helpful than that, I hope you're able to get what you need

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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