Neurology Appointment

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!

Lafontaine_b

Lafontaine_b

New
Messages
60
Reaction score
0
Points
0
Hey everyone!!

SO:

Monday was my EEG. Not gonna lie.... that was torture. Felt extremely sick all week. Had a headache for 2 days straight! I didn't have a "seizure" but after the strobe light, i had horrible vertigo. But tomorrow morning is my neurology appointment, which will show the results.

So my question: what should I bring up to my neurologist?
I do feel like I have simple/complex partial seizures, but I don't feel like I should be going in and telling my neurologist that. Especially since, I don't want to be diagnosed with it. But I don't want to leave tomorrow with no diagnosis/or solutions to anything. My work is already getting frustrated with how frequent my episodes are, and have asked me to fill out a "disability accommodation sheet", which I need a diagnosis for. SO for those with more experience than I, how should I be approaching this appointment?
 
you really should be telling them if you think you have had partial seizures, that way they may be able to diagnose you sooner
 
Hi Lafontaine,

Have you been writing down any funny feelings you have been having or anything you think may be seizure related.
If so then take that to your neurology appt.

As Sonia said tell your neurologist if you think you are having partial seizures.
Sometimes it is better to tell the neurologist more then less as it helps them give a better understanding of what types of seizures we may be having.

Good luck with your neurology appt.
 
When you go to your neurology appointment tell them of any seizures you've had or auras.
I tell my doc when I think I've had seizures because I've become so dissoriented.
Tell your neuro anything that might relate to your seizures.
 
thank you everyone, I appreciate your replies. I will be straight up with him then:) I feel like the first time he just kinda blew off my symptoms and the idea of it
being seizures because his "gut feeling is syncope". if I get no where with him today, I might try to find a neurologist who will listen to my symptoms.


Sent from my iPhone using Tapatalk
 
I will probably be on a soapbox about this for a while, and when I have more time I will start a thread, but my main suggestion to you and every single person on this board is to change from seeing a neurologist to seeing an epileptologist as soon as you can, if there is any way possible to do so. I had my first appt with one the other day and it was like a whole new world had opened opened up around my epilepsy. My wife was with me and were both absolutely amazed at the obvious level of knowledge this woman had compared to the neurologists I have seen for 30 years.
I know that there are really great neuros who are probably better than not-so-great epileptologists, but still, I think that overall you are MUCH better off seeing someone who actually specializes in this complex and confusing and highly technical disorder.

More to the point of your post, you should you should certainly tell your doc about any seizure-related feelings you are having. Good luck with the appointment!
 
do they have epileptologost in western wa do u know??


Sent from my iPhone using Tapatalk
 
oh cool! thank u!!! the closest one is 16 miles away. I guess if I was desperate enough lol! I do think it is a good idea though :)


Sent from my iPhone using Tapatalk
 
I don't even know where to begin.... I feel like I should be happy about my appointment. instead I'm upset. was just kinda hoping for a diagnosis and something to help me, like meds of SOMETHING. :(


Sent from my iPhone using Tapatalk
 
What did the doc say that upset you? Do you have a follow-up scheduled to see how things are going? A referral to another specialist? Getting answers can be a long process for some people; it is going on 4 years for me. And sometimes it can entail a second or even third opinion. Hang in there and don't give up until you have a diagnosis and treatment plan (whether or not meds are part of the picture) in place. Good luck!
 
I honestly shouldn't be upset.... my neurologist told me my EEG came back fine, but said it is a hit and miss with those.... my MRI showed a couple abnormalities including a cyst which could affect my balance/sleep, things like that but not too big of a concern. and a weird collection of blood vessels. he did say that he doesn't think these were causing my seizures. yes, he called them seizures today, but he didn't officially diagnose me... I was kinda upset that when I got there he was reading my report as if he never read it before/ like totally unprepared. I was waiting for like 20 minutes, and talked to him for like 10 minutes. I feel totally blown off.... he also mentioned symptoms like unconsciousness:, which I never told him I have lost consciousness in the past... I don't ever. I lose awareness. totally different. so it's like he hasn't listened. he wants to send me to three specialists all of which are about an hour away from me. and I can't drive, and don't have anyone, so it makes it near impossible. appointments haven't been made yet, but will be after he gets the referral out.

I guess I just really wanted an official diagnosis. I am scared. like I said, it's just me. and it influencing my job. I was asked 2 weeks ago to fill out a disability accommodation sheet, now that I have no diagnosis I can't do that. but I missed a lot of work, and without it on my file, I can be fired for attendance. I was hoping my neuro would fill that out for me today; he didn't even look at it.

also that collection of blood vessels I was talking about, I googled that and it sounds like AVM, in fact I swear he said that out loud when he was reading the report to himself. which if you read about it, it causes seizures in 20-25% people diagnosed with it. but remember, my neuro said his gut feeling is that they have nothing to do with my problems.


Sent from my iPhone using Tapatalk
 
I iust don't get how i have to be sent to like 3 different specialists right now. I been getting these multiple times a week now, can't someone at least start something for me?!?


Sent from my iPhone using Tapatalk
 
I can relate to how frustrating the day must have been for you, but you are finally getting somewhere. Your situation isn't "cut and dry", so your neurologist, in an effort to be sure you are in fact going to get a diagnosis, is referring you to 3 different doctors for their input. I think this is great, and a huge step to obtaining the answers you are looking for.

Your neurologist might be holding off on medication because some anti-seizure medications can make conditions worse if (a) they are not seizures, or (b) they are rare or unusual cause of seizures. My case was the latter, and unfortunately the first couple of medications I was on DID make things worse. Then I was put on a couple of medications that did not make things worse, but they masked the actual problem by improving the seizures somewhat but this delayed getting the proper diagnosis of the rather rare condition causing the seizures. Not the place to go into my situation, and I'm not ready to, but just an example of why the referrals prior to starting medication might in fact be a good thing :)

As for the specialists being so far away: are they in the same community at least? Let them know your difficulty with transportation. They might be willing to work together to schedule their appointments with you on the same day.
 
thanks, needed to hear that. and you are right. this could be a good thing. got to stop worrying about my job


Sent from my iPhone using Tapatalk
 
Good luck! I hope you don't have too long a wait to your specialists' appointments, and will keep us posted as to what they have to say.
 
I know it is so scarry right now Western WA huh? I was raised in the Tri-Cities what a small world. I now live in the Orlando area. I know what you mean about finding a good doctor though. Are they referring you to someone in the Yakima area? Just Trying to get a feel for where you are located. You said the cascades Although it could be the other side. It not like there is lot out there. You are more isolated then even I am. Sure is pretty though. Praying for you that they find answers and peace for you. Tina
 
I'm in Kitsap County. I love it here, it's gorgeous. They are sending me across the water to Pierce County. There is barely any special doctors in this area. they are all on the other side. thank you Tina and Jen. I really appreciate the support and prayers. just one day at a time. Any chance you have any suggestions on what I can do for work and this "disability accommodation sheet"? I made an appointment with my regular doctor for the 21st, hoping he won't blow me off and at least look at it, possibly fill it out. But I was supposed to have it done by Monday


Sent from my iPhone using Tapatalk
 
I would call the disability people first thing on Monday, and explain that you were expecting your specialist to fill it out but he refused and deferred it to your family doctor.
As for work - any way of starting your own business? I did this; it by no means pays the bills because I am just not able to work a lot (yet), but it is a help mentally to feel like I am doing something constructive. I also volunteer, and that is a help for the same reason.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom