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I was seeing a neurologist and an epitologist when I was first diagnosed with epilepsy. There's no word to describe how evil the epitologist was. I began having a ton of seizures and told her that something needed to be done, maybe a change in my meds. Her answer - "Well if you'd take your meds then you wouldn't be having seizures!". My mom and husband were at that visit with me and we all told her that I take my meds and I take them on time but she just kept telling me that I wasn't taking them which was why I was having the seizures and didn't do anything.
When I was making my next appt I blew up and told them that I NEVER wanted to see her again, only the neuro!!!!!! Everyone in the waiting room was staring at me when I was doing it. About a week later I called the office and spoke with my neuro and he made all sorts of changes with my meds that reduced the amount of seizures I was having. The epitologist won't even look at me now when I see her in the office!
Another one, I don't know if you want to call it a 'worst thing', but it was when I went to see a dermatologist because I had a really bad itchy rash all over both my arms. He looked at it for a minute and told me that I had some big long word that was probably 20 letters long. I was scared to death and thought I was going to die! When I asked him what that was he said "That's poison ivy"!
Before I was correctly diagnosed with Epilepsy, the dr. I originally saw said I was hypoglycemic. He did not order any kind of tests. Several months later, I had my 1st Tonic/Clonic seizure and was in the hospital for two months.
There have been too many dumb-a$$ docs since then that have said stupid things to me. I've had to educate some of them because they seem to be beginners. I was an "experiment" for so long.
The worst thing a neuro ever told me is after he increased my dosage for Depakene and I told him that my family Dr. had been keeping track of it because it can get into the blood platelets. The neuro looked at me with his feet upon his desk and said: "Whose the Dr. you son of a bi_ch". Then I stopped seeing him and went to a different neuro who did a blood test on me to find I was bleeding interenally because the first neuro didn't give a darn. I later found out he has 7 lawsuits for mal practice. Thanks for sharing this topic and thank you everyone for sharing your stories. I wish all of you well and May God Bless All of You!
Sue
The worst thing that a neuro "professional" told me was that my problems were psychology-based. She told me to have cognitive behavior therapy.
The funny thing here was that I was already having CBT therapy, and my psych professionals saw my seizures as physiologically-based, not psychological. The CBT was designed to help me deal with my epilepsy, not the other way around.
I guess the problem stems from the fact that my neuro health practitioner, a nurse practicioner and not an actual neurology/epileptologist, was frigid and incompetent. From my experience, she was scared sh*tless of epilepsy patients.
I don't want to be "practiced" on. I want treatment.