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PNES diagnosis- is it a joke?
Wed, 08/21/2019 - 06:43I did an overnight VEEG test at Yale in June, and didn't have any seizures. After I was there one night, the neurologist walks in with his entourage and in front of this crowd, tells me I've got a conversion disorder, and he can send in a psychiatrist. The guy was awful. So now I'm looking at research about PNES. The one thing they've worked on for the last two decades is how to disqualify PNES people from neurological care. Nothing about what it is or how to resolve it. I'm starting to think this is a joke diagnosis. When they send you to Psychiatry, modern medicine is putting you in the patient trashcan. Anybody else out there with PNES and thinks it's BS?
Comments
Does definitely depend on the
Submitted by Mwinn on Fri, 2019-08-23 - 19:49
Does definitely depend on the person, but that is awfully quick to make the decision! I was in there four days when they were treating and watching my different types, and the people I have interacted with that have received the diagnosis of PNES is usually when the doc either can’t get anything out of the patient after a couple days or the patient has what the dr deems a “troubled” or “stressful” past, like veteran, new mom, any female really, people of color, etc. I am not saying that about everyone, but this is how PNS and “conversion disorder” gets a bad rap. I just happen to have complex partial (and only two ever tonic-clonic) EEG-proven seizures, PTSD, Bipolar Disorder, and had cancer. Guess what? They tried that crap on me too...
I’m currently at risk of
Submitted by Patriotrehab on Mon, 2019-08-26 - 23:13
I’m currently at risk of being misdiagnosed with this too and am scheduled for a 7 day VEEG. Trouble is that I already had a 4 day VEEG that confirmed my epilepsy but I have a new neurologist that is convinced that because I also have a trauma history and the way that my seizures started I must have only PNES or both. So, I’m currently trying to get the original 4 day VEEG to compare the patterns because the VA limits who I can see. The real irony is that I’m also an LCSW and have treated patients with PNES and have cured them by helping them to resolve their unconscious anger and forgive. I certainly understand your frustration.
Hi BobMarine,Thanks so much
Submitted by Anonymous on Wed, 2019-08-21 - 15:12
Hi BobMarine,Thanks so much for posting and we are sorry to hear you’ve had such a negative experience. Treatment varies for each individual, so it's important that you consult with your healthcare team to determine what is best for you and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For information regarding second opinions or assistance finding an epilepsy specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist www.naec-epilepsy.org You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional supportOr contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates Seizures can take on many different forms and affect different people in different ways.Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures To learn more about PNES, please visit: https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events https://www.epilepsy.com/learn/professionals/hallway-conversations/using-provocative-tests-diagnose-pneshttps://www.epilepsy.com/article/2016/5/helpful-tools-diagnosis-and-study-psychogenic-nonepileptic-seizures