* 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 neuro 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 AEEG 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 neuro 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