How long did it take to get a dx?

[occb]

After telling Rae the trials and tribulations of my partner and the medical community, she suggested I make a thread asking how long it took for people here to get a diagnosis of epilepsy.

So, now I'm asking:

• how long did it take for you to get a diagnosis?
• Was it the first thing your doctor thought to look into, or were you misdiagnosed before getting the proper diagnosis?
• Did you have to have a tonic-clonic before getting diagnosed?
• If so, was that because doctors didn't take other signs seriously, or because you didn't understand what those signs meant?
• What helped you get the diagnosis -- EEG, MRI, giving a history, other?

Yes, I'm a nosy parker, but that's because I like to hear people's stories. So, if you want to share your story, please do so.

[Nakamova]

Basically, I had a nasty tonic-clonic, woke up in the ER, and within about two weeks I was diagnosed with epilepsy based on the "spike & dome" pattern on my EEG. In hindsight, there were a few tiny things in the 5 years prior to the t-c that were probably seizure-related, but I didn't pay any attention at the time (because they were so minor).

[dfwtexas]

I had a bad trauma to my arm and developed multiple infections. I was on IV antibotics for 2 years and then a year on oral meds. At the end of my oral meds, I started having walking (and driving!) blackouts. I really thought it was some kind of sleep disorder since I have had a long history with sleepwalking when I was younger.
I mentioned the blackouts to my infectious disease doc and the first thing out of his mouth was "you are having seizures". My father and some friends had grande mals and so my first reaction was, I know what seizure are like, mine are nothing like that! He talked me into seeing a neurogist and upon seeing the neurologist, he agreed that he thought I was having seizures and ordered an EEG and MRI for the following day. The day after having the test, his office called me and asked that I come over to his office IMMEDIATELY! He said I EEG did show seizures.
My neurologist has told me that only 40% of his E patients have had seizures show up on EEGs.
My seizures are all simple and complex partials. I think I was lucky to have some really great doctors catch this so quickly!

[Rae1889]

My diagnosis was pretty quick after ending up in status tonic clonics in october. so they right then and there told me it was E. no other explaintions or possible diagnosises. just E. i had seizure before that but never went to the hospital for them.

[Rae1889]

what about for those who have never had a grand mal? how long did it take you to gat diagnosed, and were you taken seriously at first?

[occb]

Oh yeah Rae, I totally left that question out, didn't I? What she said ^^

[Cint]

I started having simple partial, complex partial and went to a dr. who initially diagnosed it as hypoglycemia without any testing. About 6-7 months later, I had my 1st tonic/clonic seizure on my way out of the shower, suffering 1st and 2nd degree burns on my back and arm.

That took place 30 years ago, so back then we didn't have MRIs and not as much was understood about epilepsy.

[dumbspouse]

My wife was diagnosed with hers after she kept biting her sister. Apparently when she was biting her she was releasing pressure from her brain. My wife was 4 at the time.

[occb]

This is fascinating! Everybody has such different backgrounds and experiences.

[Crystal11]

* how long did it take for you to get a diagnosis?
My diagnosis was at age 6, 13, & 23. I was born three months premature and was having Absence seizures but was not medicated due to parent fear. I was on so many meds just to survive while in NICU that it became a fear of other things happening as a result. We learned to live with interuption in thinking, learning and was held back a year in first grade..
Then it got worse, longer into complex partial seizure at 13 and was more involved. Started Tegretol but didn't help totally.
Then at age 23 got diagnosed again with complex partials after taking things into my own hands, realized that college was becoming more difficult when seizures were more frequent. Triggers? Not eating well, bad sleeping schedule, A & B day schedules (set of classes diff each day), going to bed real late working on homework.

* Was it the first thing your doctor thought to look into, or were you misdiagnosed before getting the proper diagnosis?

I asked to see a neurologist, although my family doctor Dx with complex partial seizures after my detailed explaination of what was going on. He put me back on Tegretol but it was too low. I forgot how much I took and called back to let them know. He didn't want to change it until I saw neurologist just to be safe.
Was seeing a cardiologist at the time too and was tested for other conditions that could be seizure related, or cardiac issues- was treated for Tachycardia and PACs.

* Did you have to have a tonic-clonic before getting diagnosed?
* If so, was that because doctors didn't take other signs seriously, or because you didn't understand what those signs meant?
I have never had a tonic-clonic seizure but was told by my neurologist that its a possiblity that I might have one if the complex partial seizure spreads to my whole brain. I pray that it never happens!

* What helped you get the diagnosis -- EEG, MRI, giving a history, other?
An explaination of my symptoms, asking many many questions of the doctor, going through my medical history which was long, and an ambulatory EEG which lasted 3 days. I did this EEG while at home- but had to wear it to school for 3 days! Horrible! But it showed seizure activity and spike-and-wave patterns and driving responce to light stimulation as well.

New neurologist says my seizures are probably coming from the left side of my brain since I feel strange in my right arm from my shoulder to my elbow- strange but it gives a sign to where the seizures are coming from.
I have no idea why it does this, or why I feel strange on that part of my body. I can only guess that its misfiring on that motor strip after traveling from the temporal lobe?? I don't really know- not a neurologist LOL

Good questions- sometimes it takes a while to get a diagnosis but keep at it. Ask any questions you can think of- make sure your diagnosis is accurate and possible get a second opinion just to be sure so as not to get a misdiagnosis. There are many seizure-immitators out there as well- those usually can be treated with medications or therapy or other medical treatments..

Good luck with everything,
Crystal and her guide Umbro

[C0urt]

After spending a month in a hospital in status epileptis at several ponts, more then 200 trips to e.r.'s for seizures. and several weeks in hospitals on different occasions for severe seizure incidents and having my dl taken. and 3 years later. I still don't have an offical diagnosis.

[occb]

After spending a month in a hospital in status epileptis at several ponts, more then 200 trips to e.r.'s for seizures. and several weeks in hospitals on different occasions for severe seizure incidents and having my dl taken. and 3 years later. I still don't have an offical diagnosis.

What?! That's just... I'm speechless! Why?

[C0urt]

all my test usually come back clean and no scaring on my brain.

[Rae1889]

I think that is Bull! Why should you have to go through all of that, over and over and over again. for nobody to listen and take you seriously! argh doctors tick me off

Thats it. im going to se how much debt i am comfortable putting myself into. and i am going to be a neurologist! no....epileptologist!!!!!!

[BuckeyeFan]

I was diagnosed with a seizure disorder within a couple of weeks of my first tonic-clonic. However, it was just a basic "you had a seizure, so you have a seizure disorder". It was confirmed by an EEG and other causes were ruled out. That was 28 years ago.

[epileric]

My dad was a child psychologist so when I was 3 or 4 while talking at the dinner table I stopped talking in mid-sentence, stared into space for about 30 seconds then picked up where I left off.

My dad recognized it right away as a seizure.

[occb]

C0urt, that's just awful. Have you looked into seeing if there's an Epilepsy society near you, and if they can help?

[C0urt]

C0urt, that's just awful. Have you looked into seeing if there's an Epilepsy society near you, and if they can help?

Next week the next major goal is insurance, and I have to get to alabama at some point and pick up all of my medical records. My disabilty case is currently pending. and while I expect the worse, it is still nice to hope for the best :-)

[becks]

it took about a month british hospitals are a joke sometimes

[occb]

I'll keep my fingers crossed for you C0urt.

Becks -- did it take a month after having a tonic-clonic?