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What Is Your Story On Being Diagnosed?

A MyEpilepsyTeam Member asked a question 💭
Lincoln, NE

What is your story on being diagnosed am asking because I think I am on the other side of things with my co-worker I think I have seen hers and she is not diagnosed Her doctor told her she didn’t know what was wrong with her. I told her to see a neurologist and get a new doctor but I don’t think she will listen to me. My parents saw my first one and took me to the emergency room where they did blood work testing if I was on drugs each time and wasn’t on meds and had to sleep off effects of… read more

November 27, 2023 (edited)
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A MyEpilepsyTeam Member

I was a month away of turning 2 yrs of age. My parents have just got home from shopping. I was put on the table in my baby carrier. According to parents , I was first moving and chatting . The next moment I went limp and started turning blue. Ambulance was called. The Dr. Then alerted my parent that I had Epilepsy.

November 27, 2023
A MyEpilepsyTeam Member

I was diagnosed at 7 on school picture day right after I moved to a new school I had one a full on tonic clonic for about 5 minutes they had an ambulance come and take me to the ER the principal came on the ambulance with me since my parents weren't there yet and they didn't want to wait so they just had my parents meet us there my parents had no idea what a seizure even was at the time I was hospitalized for 3 days for them to try to figure out what was going on they never truly figured it out they have there assumptions but no definite answer this med student wanted to do a spinal tap on me to check for MS my parents were terrified I had no idea what was going on and supposedly I really liked the med student so I didn't care the attending came in and put a stop to it saying we can start on medications first it was a lot of trial and error switching around for years eventually they found a dosage that gets me well enough controlled to the point I basically live a normal life but I got held back a year in school since I missed so much I grew up with a lot of kids not wanting to be near me or making fun of me because of being held back and for having seizures, my psychiatrist believed it actually gave me a mild form of PTSD

November 27, 2023 (edited)
A MyEpilepsyTeam Member

I was diagnosed with epilepsy at 7, before I was experiencing shakes and didn't know, I had happen prior going to grade school, then had gotten a sleeping bag for my birthday, slept in the living room and went through a seizure and was waking up from, morning time, anyway, my parents and two police officers were there, I heard something about My parents ask about what do think is happening with him, and one of the police officers said I think he's on drugs, but wasn't, I was taken to er and diagnosed with epilepsy there, but am ok with and are more stable than before and live with, my opinion here.

November 27, 2023
A MyEpilepsyTeam Member

Wow that a long story to wright.
Look up my story
john3717

November 29, 2023
A MyEpilepsyTeam Member

At 68 epilepsy is not on your radar at all. I had many seizures, both focal and tonic clonic. I had no auras or memory of the seizure. I lucked out when I had a seizure in my GP's office and she referred me for follow-up tests. Then we sought out a neurologist .
The whole ordeal was truamatic for both my husband and me.

November 28, 2023

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