Finally Diagnosed with Epilepsy

By CommunityMembereb89af

1 min read

I was finally diagnosed at the age of 29 after being passed along from doctor to doctor since I was at least 15 years old due to the fact most of my seizures were unwitnessed and only happened once or twice a year.

My doctor didn't give up

It was a relief that my primary care physician didn't give up looming for answers. He was correct for 11 years. The fact I saw him the day I had a big one and took an ambulance ride that night. All because the neuro department passed me around to others that it wasn't their specialty all because my step grandma was my doctors MA.

Feeling defeating but not giving up

I felt defeated. They seriously called security on us when we went to the patient complaint department. After all of that, I finally got see the correct doctor! But, then he was in denial because they were so infrequent and I read normal on tests and the fact I don't loose my bowels. He finally decided after I had another seizure that it was indeed epilepsy. I had epilepsy. I'm so thankful for my primary care physician who's sadly now retired. But the highlight of my story is that I have been seizure free for 6 years!

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Carmenwondering89 Member
I feel your pain! I was about 14 when I experienced the first of what I call seizures. I always just wrote them off but after I had me second daughter when I was 23 these episodes (of what I believe are simple partial seizures) began happening so frequently I couldn’t ignore it. I started seeing a neurologist and got to the point where they were going to do an MRI and lost health insurance the day before my appointment. This was in 2012. I went until 2022 without health insurance due to the fact I worked for a small family company that didn’t offer it and after Obama changed all the healthcare laws I did not qualify for any help. I fell into the small category of people who made too much money for Medicaid and not enough money to get a credit for the market place. Anyways, I finally got health insurance in 2022 so my first request from my family doctor was a referral to neurology. It’s been a disaster trying to get someone to believe or understand my symptoms. I’ve had an EKG, been told I have migraines, I had a sleep study done because they said it may be sleep apnea, my sleep doctor was the only one who has actually listened but in her realm of practice her only thought is narcolepsy. Unfortunately, my neurologist never got to see my sleep test results because he quit right after I completed it (after waiting 6 months for the test and it falling on my birthday where I had to spend it at the hospital instead of with my family). The oddity and range of physical symptoms I have experienced that I believe are SP Seizures seem to make doctors think I’m crazy, but I know I have repeated seizure activity. I’m always aware and it never lasts long (I’d say 5-30 seconds tops but I will say time is hard to gauge in the midst) frequency depends on my sleep quality and stress it seems and the more frequent they are the shorter they are like short repeated bursts of them. They started in my teens as what I call false falls (so kinda buckling at the knees but standing up and locking the knees before falling in a sequence of three to four times rapidly-like if you asked me to do it on my own will I could never repeat a squat that quickly) then they would happen every time I would yawn, I would feel numb and tingly all over like waves where surging through my skin and my hand would tremor, sometimes I just freeze, if I’m laying down when it happens my face goes numb and I feel as if my body is melting through the earth. I had one instance where I thought I was having a heart attack because I had a feeling as if energy had exploded from my stomach like a bomb and shot in an outward wave Jacksonian style through my body. I legitimately felt like the Incredible Hulk but the heat on my chest made me think it was a heart attack. I’ve had multiple times manifest into stiff legs that walk on their own forwards or backwards. But for some reason no one can tell me what up. It’s never caught on tests. I’m at the point I think I may have MS that has a symptom of epilepsy but who knows. Getting doctors to listen and care is tough. I’m glad you had one that took the time to help!
Sophia Member
So glad you found the Dr you needed. Although as very frustrating as it sounds ... I am sure you have heard, we must be our own advocates! You are proof of that. How true! Wishing you continued "non seizure" future 😊