How long did you wait for a diagnosis?

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LJ-Bain

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Hey there!

I haven't figured out how to place a poll yet but I was wondering how long
everyone waited until they got diagnosed?
I thought that my 4 yrs was a long time but perhaps others had to wait longer?
Maybe partial seizures are more difficult to diagnose than tonic clonics/grand mals but I was just curious.
 
Two weeks. (I started out with some big ol' tonic clonic seizures, and then had an EEG that was apparently "classic" for epilepsy.)
 
Its only been just shy 2 weeks since our daughter had her TC. We wont see the neurologist until the 22nd. Her primary Dr. feels that even tho her EEG was 'normal' with the strong family history of epilepsy and the type of seizure she had that he will diagnose and want to start her on medication. However, I have been reading that most neurologist wont start medication until after the second seizure. If thats the case who knows how long it could take. From what I've read she could have another one today or she may go a few years without having one. Heck wouldnt it be grand if she never had another one? :)
 
I had a t-c about 19 months ago and the tests didn't show anything abnormal so I put it in the back of my mind. A month and a half ago I had a 2nd one and as soon as I saw the neuro he put me on lamotrigine and ordered a 72 hour EEG. Waiting to go back for the results on that.
 
Well that's tricky... as for the partials I was improperly diagnosed with PTSD for 15 years, but with the Tonic-Clonics it was instant... as soon as I had the second one I seen a neurologist within two weeks and he said 'Now that you've had two (with an unknown cause at this time) this is epilepsy.'
That was 8.5 years ago and there's still some days I can't believe it.
 
Nakamova said:
Two weeks. (I started out with some big ol' tonic clonic seizures, and then had an EEG that was apparently "classic" for epilepsy.)
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Yes,same for me,had first tonic then another six weeks later,and as they say that was that!!!
 
qtowngirl said:
Well that's tricky... as for the partials I was improperly diagnosed with PTSD for 15 years, but with the Tonic-Clonics it was instant... as soon as I had the second one I seen a neurologist within two weeks and he said 'Now that you've had two (with an unknown cause at this time) this is epilepsy.'
That was 8.5 years ago and there's still some days I can't believe it.
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I know where your coming from there,i can be doing the most unimportant things,having a great day,out shopping,having a pint then suddenly it comes into my head"ive got epilepsy" i mean wtf,where the hell does that come from?
 
neil129 said:
I know where your coming from there,i can be doing the most unimportant things,having a great day,out shopping,having a pint then suddenly it comes into my head"ive got epilepsy" i mean wtf,where the hell does that come from?
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We're so on the same page Neil - lol what a mess we'd be sitting there having a pint together, realizing it here and there. The thought just comes out of nowhere and I just shake my head like, "Epilepsy. Epilepsy? I HAVE EPILEPSY?! Then shake my head again and go on with whatever I was doing like it's just another day. 'Cuz that's all it is really.
But still...
 
Yeah,"What do you want,im of to the bar?" Two minutes later "What was it you wanted again?,and by the way ive got epilepsy!!!" Better make it a double then!!!
 
I had epilepsy when I was a baby & an infant, I was approx 9 months when I had my 1st seizure but think it took a couple of months for the drs to diagnose it as being epilepsy.

After being seizure free for 22 years I had another seizure when I was 24. My Mum had rung me 1 morning & I was making no sense & was very vague, she didn't know what was wrong & as she lives 30 mins away rang a neighbour to check on me. My neighbour came to see me, saw that I wasn't my usual self & rang the ambulance. When I was taken to hospital no one knew what was wrong with me because at that stage I was very vague & confused. It wasn't until while I was in hospital that I took a tonic clonic that the drs realised that my seizures had returned.

I stayed in hospital overnight but was referred to see a neurologist the next day who did an EEG & confirmed that it was epilepsy.
 
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I have a childhood history but I've been struggling for a diagnosis (that doesn't change) for 2 years now. I've had 3 hospital visits and several EEG's, ECG's, halter monitors (heart), SO many blood tests, MRI's etc. Going for another EEG today so i'm praying something shows up. I'm on medication but it isn't working so we're starting all over again. Sigh...
 
Neil129 & qtowngirl
I know what you mean about sometimes forgetting about it and then having the sudden realization...
Just this Christmas past it was the last thing on my mind. I had been having daily seizures but still Christmas morning I had forgotten about having them. I was finishing my breakfast and waiting for my parents to arrive when I felt the fuzzies come on and I'm like...oh yeah, right, I have seizures and Merry Christmas to me.

Thanks everyone for sharing.
It seems like what I thought...if you have tonic clonics you get a pretty speedy diagnosis but if you have simple or complex partials they take their sweet time about it.

C'est la vie. That's life I guess. You just have to keep on plugging away.
 
LJ-Bain said:
...if you have tonic clonics you get a pretty speedy diagnosis but if you have simple or complex partials they take their sweet time about it.
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Any idea on why that is? From what I've been reading about seizures is that they each have their own pretty specific symptoms.
 
Kaitybugsmom said:
Any idea on why that is? From what I've been reading about seizures is that they each have their own pretty specific symptoms.
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When it comes to partials that really depends on what your symptoms are. If they're of the psychic nature rather than physical (jerking etc.), then there are actually a number of other conditions they have to look at, and LJ-Bain is right, it's not always looked at in a speedy manner.
Post Traumatic Stress Disorder (PTSD) symptoms mimic simple partials in a big way, not only have I read research on this but this was also my mis-diagnosis in my teens. There are other mental illnesses as well such as bi-polar where it really can take a doctor a while to pin it down, esp. if the eeg's and mri's are coming out clear. A lot of the times someone saying they know something's wrong, that they just don't feel right, that they're spacing out, etc... isn't near enough to start with epilepsy, which can mean months of further testing, and sometimes shitty for us maybe a grand mal in the meantime... until they can rule out everything else.
That's the only saving grace about grand mals... of the many many types of seizures there is no doubt what they are.
 
qtowngirl said:
That's the only saving grace about grand mals... of the many many types of seizures there is no doubt what they are.
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Yes that is true!

You know I hadnt looked at it that way before. When I read the text in the book or on the screen about seizures and the different types it seems simple as that. But when you put the whole package together it could be more difficult.
 
im still waiting. im about to thro in the white flag and just give up. I hope I never have the gran-mal, but i've been reading and I think thats what its leading up to. I have horrible evenings and mornings. not sure whats going on at nite while sleeping. I had one eeg. my cardiologist thinks i could be having partial onset seizures, my primary dr thinks so as well. the neurologist is to smart to think about it at all (im suppose to see him in two weeks). Im not sure what he thinks and dont really care, but to appease my dr, i will see him and after this, if nothing no diagnosis that is, im done with it. kay sara sara sara, what ever will be will be. I'll except it as a gift and move on to the next level. i tell everyone that i walked away from my aneurysm with no physical impairment, maybe this horrible, gut wrenching, and all of the other small nuiances is my impairment. it could have been worse. im alive and am grateful for that.
 
Mayltyme - My mother had an aneurysm, she has had one surgery and wanting to do another as they found at least two others. She has had some different things going on with her as well. Not sure where you are located at, but if you would like I could talk to her and see what type of effects she has had. Maybe there is some common effects from the surgery? You can tell me to buzz off too ;)
 
Please do. I have yet to find one brain aneurysm survivor who is or has experience seizures, aura's or anything similar. If nothing else, it would atleast be confirmation for me. It would make me feel that less crazy.
 
LJ-Bain said:
Maybe partial seizures are more difficult to diagnose than tonic clonics/grand mals but I was just curious.
Click to expand...

My seizures started out as SP and CP. I had been to the dr. and he diagnosed me as hypoglycemic, without any testing. He prescribed some medication, to no avail. Those were happening for about six months. Then I had my first TC seizure and ended up in the hospital for two months with serious burns. While in the hospital with all the testing, they diagnosed me with epilepsy. BTW, my blood sugar levels were fine back then, 32 years ago.
 
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