How long did it take to get a dx?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Rebecca was diagnosed from #1 neurologist (after viewing MRI and abnormal EEG)
Undiagnosed from #2 neurologist (team at UCLA - said the birthmark on the brain was not causing seizures, and EEG and VEEG were normal)
Rediagnosed at #3 neurologist (USC - no additional testing done)
Currently doing best following nutritional goals set.
 
Last edited:
i had my first seizure on the 16th august 1998 the day after my cousins wedding my mum hadn't long passed away i was really stressed and it was really hot on the morning of the 16th the day after my cousins wedding my family and i went down for breakfast and after ordering my breakfast my family said i picked up ketchup and threw it away then started seizing i dont remember any of this. i was in hospital that day and night once i got home i was in seeing a nerologist within a week and then got my results back the same day and was on sodium valproate a week later i had nothing for a year then i started having petit mal seizures everyday for year got really annoying but 13yrs later i am on keppra and all going well for the moment :woot:
 
Wow, so rollercoaster diagnoses are pretty common, unless you have a Dr. in the family. I knew I should have become a doc ;)
 
the only major downside is sodium valproate causes polycystic ovaries and i was diagnosed last year not the best time for me i fell women should not be put on this drug as some of the side affects are not nice pcos means i might never be able to have children as my ovaries are full of cysts and my eggs are having problems maturing
 
For years I've been having what I now believe were a ton of simple partials. Of course I didn't know they were seizures at the time nor did I know anything about Epilepsy, and whenever I went to visit the doctors about these symptoms, they were always dismissed as anxiety. Then I finally had my first TC. Surprise surprise, the EEG came back normal. My doctor immediately blew me off, (I don't think she had much experience with E considering how she treated me) because the first EEG was normal.

I began to doubt everything. I began to wonder, "what if it's all in my head? What if it's just anxiety?" But then another part of me always responded to myself with, "well, convulsive seizures aren't normal." This went on for months, with the seizures not stopping. The hardest part for me was that all of the major ones were nocturnal, so I began to worry that my doctor thought I was faking. But eventually I had a bad TC in my sleep that chewed up my tongue so bad and messed up my right arm (I must have pulled a muscle or something during the seizure, it was hard to move without pain for at least a week).

This was bad enough that I realized I had to do something. I went to a new doctor and she scheduled another EEG. At this point all I was thinking was "here we go again..." in frustration, as I was expecting it to be normal as the first one was. Sure enough, it was. However, she still gave me the diagnosis based entirely on my history, as the EEG's didn't seem to be picking up anything despite the fact that I was having obvious Epilepsy symptoms.

Getting the diagnosis was one of the most frustrating and stressful experiences of my life. I actually felt relieved when I was diagnosed, not because I'm glad I have E (hell no) but because I felt like I finally have a final answer.
 
Katern - I am going to play devils advocate or something of the sort....(hope you aren't offended)

Your diagnosis put a name on the symptom... but has anyone ever attempted to find the cause? This is a frustration I have with the current state of conventional medicine.
 
RobinN said:
Katern - I am going to play devils advocate or something of the sort....(hope you aren't offended)

Your diagnosis put a name on the symptom... but has anyone ever attempted to find the cause? This is a frustration I have with the current state of conventional medicine.
Click to expand...

They gave me an MRI which came up clean, and they quickly ruled out things like MS, but beyond that, no. And I have to completely agree with you.
 
A friend of mine has nocturnal epilepsy and has to go to bed with lights on til she falls asleep or she will fit it's not an uncommon type of epilepsy
 
Ignorance is bliss

I had my first seizure when I was 17. I just stared out into space for about 30 seconds. I went to my primary care doc, who sent me to a neurologist. He put me on a med, but didn't really explain my diagnosis at all. We were just so scared and I just wanted to get rid of these spells, that I just took the med without question.
After some time of this med (I can't remember much, not the name of the rx) not working, we tried another one. I was so scared, I didn't want a diagnosis, just wanted the spells to go away.
No control of seizures with meds. I had MRI, EEG, and all the other exams. Finally, my neurologist told me that I was having seizures. I didn't didn't want to believe that, so I just took more meds and went off to college. After 3 years of college, I came back home and lived with my parents. After moving back, I went through more MRIs, EEGs, and other exams to try to control my seizures. I finished college, but no stopping them.
I have only had 1 tonic clonic, when I went to the highest elevation in CO, in the mountains.
4 years ago, I had an internal EEG for 8 days. My neurologist was hoping that we could extract my focal point of the seizure, but they had to locate it. So I was in the hospital with my skull open, and EEG cords attached to my brain. Unfortunately, my focal point is too near my visual cortex, so if they removed it, I would lose half my vision in each eye. :sad:

Now, I can never have an MRI again, I have a titanium plate for my skull where they openned me up. ;-)
 
2 Years and a different neuro than I started out with. My MRI shows scarring but my EEG would come back normal. I have had an insane amount of head trauma though (7 concussions, stitches, haemotomas,etc)...they arent sure if that is the cause or some unknown virus I had right before I started having seizures.
 
The multiple head injury thing just came up on the thread I started to keep track of my partner's experiences. There are few people who've had multiple head traumas, and it seems like kind of a chicken/egg thing -- were they getting head injuries because they're seizing and therefore more vulnerable to falling/being hit by an object, or did the falling/being hit start it all.
 
Well occb, for me the head trauma came first...my first concussion occurred before I was a year old, not long after I started to walk. I've actually had fewer head injuries since I started seizing than I did before but I was putting more thought into how my house was laid out. I look at my house now and the lay out just screams sharp corners (which is why I'm covered in bruises from bouncing off of them) which isn't really smart but I'm rebelling, lol.
 
lol rebellion also seems to be a common theme. *yoda voice* Feisty group of people you are.
 
You must log in or register to reply here.
Back
Top Bottom