How long for a diagnosis?

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!

D

DEEMO :)

Pillar
Messages
44
Reaction score
0
Points
31
Hi :)

I have finally joined after stalking the forums for some information the last few months. Thanks to everyone for all the discussions. It really helped when I needed answers and had no idea where to get the most accurate information. I have now concluded that people with Epilepsy are more helpful compared to those who do not :D
I have "Suspected" left temporal lobe epilepsy. I have heaps of simple partial seizures in clusters on and off and I also have 1-4 complex partial seizures a month.
I am starting to really struggle at work. I feel like I am always tired and I am finding it hard to keep up with the work load :/
I have taken epilim, tegretol and frisium but I was taken off them because of side effects. I am now taking Keppra and Lamictal, with clonazepam when I need it. I still have side effects from my meds but I feel when I tell my specialist about the side effects it just gets brushed off. I find that a little disappointing. It feels like at times they don't believe what I am saying.

Finally I come to my question :) thought I would give a quick background ;)
My first seizure was 16 months ago. I have had a few tests. Have had normal MRI, EEGS and CT. I have had an abnormal EEG and PET scan. I have not heard from my Epileptologist since November. My last test was in January. I was hoping that some people could give me some insight into how long it took them to get diagnosed and get rid of that "Suspected" label?

I know specialists are busy but my diagnosis has been going on for almost a year and a half. No one is giving me answers. I would even be happy if they said "see you in 12 months to talk about results". I guess its not the timing but the unknown that I am not liking.

Thanks in Advances
 
How long is a piece of string? , been going on since December think most people around here took them a few years
 
It's different for everybody, a lot of people here have been having seizures for years and still don't have a proper diagnosis. I was lucky it took less than a year, probably about 6 months after having my first tonic-colonic seizure, that's when I discovered that I had been having partials for at least 18 months, I had no idea what they were.

Hope you're one of the lucky ones, good luck :)
 
Thankyou

I hope mine does not go on for years (fingers crossed). Those people who still do not have a diagnosis years later must be very strong people. I would be a mess.
 
A long time from what I gather. My first seizure was the beginning of March. I've been lucky to have a great neurologist and be 2.5 months down the line with blood tests, ECG, MRI and EEG. Unfortunately, however, all have been clean apart from a very severe vitamin d deficiency. I'm also a little unlucky in that I am studying in a different country from home and have no family or friends here, so my seizures have so far been unwitnessed. From what I gather, in order to receive a diagnosis I need to have a witnessed seizure and for it to show up in an EEG. So it could be many months before that happens.

It's frustrating isn't it. If I have epilepsy I'd rather just be able to deal with it and tell people. But saying I have "suspected epilepsy" just makes me feel dumb.
 
I agree with feeling stupid saying "suspected" epilepsy. People seem to react differently to it. I usually have people say "oh its only suspected, I am sure they will find out that it is something else". I have had an abnormal EEG and PET but no diagnosis yet. Not sure why :) I think they are being really cautious. I finished University 2 years ago and became sick after starting full time work. I think I am frustrated because all I want to do is work without becoming so tired.

I have the same problem with having no one to witness my bigger seizures. I live by myself and every one that I have had where I fall to the floor I have been alone. family have seen the simple partials with a sudden change in mood or facial expression. I have tried to film them but I have had no luck with that. Too confused to think about grabbing a camera when I am starting to have one. My sister did witness a few seizures one of my past meds created where my head would suddenly drop. They were my 1 second seizures. Only had them on that med.

It would be so hard being in a different country. Hope all goes well for you and you get a speedy diagnosis :) I go up and down with how frustrated I am. It only really bothers me when I am in my seizure time.
I hope they sort out your extreme vitamin D deficiency. Studying would be very hard during this stressful time for you.
 
Hi DEEMO --

Epilepsy was diagnosed right away for me -- I had a big ol' grand mal seizure in public, and then I had a positive EEG immediately after. But with less "obvious" kinds of seizures it can take much longer. Many neurologists seem to have a harder time diagnosing partial seizures, or too readily default to psychiatric explanations.

I hope you get some answers soon. Don't be shy about being a "squeaky wheel". Sometimes it can take a lot of pushing and persistence to get the doctors' attention.
 
DEEMO, I'm so glad there's someone out there who feels the same. I share your frustrations. I feel like I'm going crazy at times because it's unwitnessed and a lot of people have just shrugged it off and boiled it down to stress or tiredness. I'm on suppliments for the vitamin d now and I move home in ten days.(Wow I just had some awesome deja vu).

I hope that you get a diagnosis soon. They're being really cautious with me too, I guess 'cause epilepsy is kinda a big deal? But I really hope everything works out for you.
 
I guess i am one of those people that does not like to put other people out so i just wait to hear from them. I might call up my epileptologist this week :)

I did have a complex seizure witnessed. I was shopping. I eventually came around but because it was just the start of my Epilepsy i just kept shopping. I think i was too embarrased to ask anyone what i looked like. I did black out for a little bit. Now im kicking myself for not asking.

I did have an abnormal EEG between seizures during the hyperventilation. Spiking and slowing :) wish i knew now to read an EEG, and my PET showed my left temporal lobe had an abnormal reading. I think i am just being impatient :) will have to distract myself until i hear from them. Usually a letter in the mail.

It is good your moving back home albie. I hope you find a good support network back home with a good epileptologist. I am so glad you can relate. I felt guilty for feeling frustrated with the process. Especially because i have had quite a few complex partial seizures. We do not even know if i am having tonic clonics when i have my bad ones because no one has witnessed them. And on top of that i lose about 5 hours of memory before and after the seizure so all i can say is i dont know when my specialist asks questions. That makes me feel stupid. All i know is i wake up on the floor and cant remember anything that happened. I lost a whole day once that was pretty funny when i was talking to my sister and she was confused because i had forgotten a conversation i already had with her.

This sounds really horrible but i do hope you have a seizure in front of someone. Hopefully your neurologist while hooked up to an EEG ;)

Thanks
 
Hey Deemo,

I asked my doc at the beginning of my epilepsy if I was epileptic, he never answered me. But I'll tell you if you have had "I also have 1-4 complex partial seizures a month" for 16 months now, than I feel safe to say it's no longer suspected, i would say it's a fact. Even though my doc didn't tell me, I knew deep down that I was, why because of the definition of Epilepsy. Sorry you have to be here, but was there anything that happened to you when this all started?

Regards,
Zolt
 
Thanks Zolt

If i have to tell anyone i say its epilepsy. It is only a problem for me when i apply for loans. I cant get a large loan without income protection and everytime i apply for the insurance they decline me because they have not fully diagnosed me or controlled it yet. Thats the frustrating part about the "suspected" label. I will have to wait a while now before i buy a house :/ i guess i need a dose of patients lol

Nothing big happened around that time. I did have a very small head injury (did not get nocked out) 3 months before but it really was not that bad so they think it is not linked. MRI was also clear showing no damage :) which is good.
I did start a new job which was very stressful at the time (high school teacher LOL) and moved houses. They really cant find any cause for it.

I think i may have become used to the seizures, well at least i know what to expect now. The bit i do not like is the side affects of the meds. AAAAHHHH!!! they are terrible. Im that lucky person that gets the rare or new side affects. I have stunned medical professionals a few times lol
 
PS

Please dont judge on grammar and spelling because i said i was a teacher :) its the weekend :D
 
DEEMO :) said:
PS

Please dont judge on grammar and spelling because i said i was a teacher :) its the weekend :D
Click to expand...

Haha I'm a teacher too, I understand. My grammar and spelling is far from perfect ... Do as I teach not as I do.

When I applied recently for travel insurance I was originally refused insurance for Epilepsy. I was confused because I'd been approved every other time I'd applied for insurance and my status had not changed (only partial seizures and no recent hospitalisations). When the documentation came I saw that the woman who did my insurance and asked questions about my about my seizures etc, had put in that I had a benign brain tumour, spelt my name wrong, and put me down as a 'Mr' ..... This is now all corrected.

I consider myself pretty lucky, my tonic-clonics were all witnessed by my husband and as have been most of my partials. I also had a seizure during my EEG which helped pinpoint where the seizures were originating from. It was frustrating enough waiting months for a proper diagnosis, I don't know how I would have coped with years of waiting.
 
Gday deemo .
Hey mate look on the positive side you may not have E , don`t stress too much about it ! if you do have E stess won`t make it go away however not stressing may reduce siezures , have you thought about getting a dash cam ( camera for car ) and have recording while you are asleep , in house ect , all the best .
 
Last edited:
Crunchy Frog i cant believe they wrote that you had a brain tumor. Wonder where they pulled that from. The 3 companies i tried for insurance just said my current medical status does not support their criteria for a successful application. They had the right gender and diagnosis :D

Thankyou Marty
The annoying part is that i have had tests which show epilepsy they just wont label it. Athough i do find it interesting because sugery was suggested before i was diagnosed. I think they do believe its epilepsy they are just reluctant to fully diagnose it until one is witnessed. Would be great though if they said it was something really easy to get rid of. that would make me very happy. My issue is my seizures tend to have a toll on how i think so i seem to get stressed during that time. Kind of a bad cycle. I seem to be fine in my 2 weeks of seizure freedom before they hit again.

As for the camera :/ i have set one up, even spent quite a bit of money to do it, I was very proud of myself until i realised i did not buy a large enough SD card for it so the memory runs out in 3 hours of filming. Mine usually happen early morning or when i am waking up. So next job is to buy a bigger card.
It will be embarrassing to see my sleep walking when i watch it. I am one of those special people who wakes up mid doing something really stupid like trying to hang clothes off the ceiling with no clothes in my hands :D
 
It`s hard mate , it bugger`s you a bit ! i imagine that your job should be safe so i hope that you are lucky there , it hits home when you can`t work , i think that the dash cam`s have a few hours of memory and just keeps recording until it gets turned off .
 
That seems profoundly unfair, especially since you don't have an official diagnosis. Are you from Australia? (I think I saw that in your profile). I've been able to get insurance and I've actually been diagnosed. Maybe if you get an official diagnosis and get them under control it might be different. What kind of seizures do you have?. We've recently got a rather large loan and needed income protection, I've also got life insurance. It sucks that having a label is so important.

I have no idea where benign brain tumour came from, since it was travel insurance are you even allowed to travel overseas with a brain tumour?
 
Last edited:
DEEMO :) said:
It will be embarrassing to see my sleep walking when i watch it. I am one of those special people who wakes up mid doing something really stupid like trying to hang clothes off the ceiling with no clothes in my hands :D
Click to expand...

I'm glad I'm not the only one who sleep walks and does weird things, I think I must act out my dreams or something.
 
My job is definitely safe which is a relief :) I did have to have quite a bit of time off last year but I seem to be going ok this year. I will have to do some shopping and see what I can find with a longer recording time.

They said I can be insured when I am diagnosed and have been out of hospital and controlled for at least 12 months. Yeah I'm from Australia. I have complex partial seizures that vary in severity. Medication does reduce them but finding one with side affects I can live with has proven difficult. May be a few more years until I can get insurance. Every time I have a seizure it resets my 12 month seizure free period for my licence :/

I would hate to have a tumour and want to travel. Should avoid that insurance company.
 
After a terrible week at work and extreme fatigue I finally set a camera up in my room. First night I filmed 1 CP seizure. Second night got 2 CPS and last night I filmed 5 CPs with quite a bit of large twitches and jerking. Now I know I am having more then I first thought and why I am so tired all the time. I noticed I barely sleep and the seizures stop me going into a deeper sleep.

As happy as I am I finally got quite a few on camera, I am so EMBARRASSED!! I cant believe I look like that. Plus everything I am doing is a typical temporal lobe seizure. Its like I'm obsessed with my face. I cant stop touching my face and trying to grab things. SO EMBARRASSED. Now I am actually glad no one has seen them yet :D Do you ever get over the shock of finally seeing what you look like?
 
You must log in or register to reply here.
Back
Top Bottom