My Neurologist Appointment

[Rae1889]

Hello Everyone!

I went for my neuro appointment on the 20th, and was a little unimpressed. He was 45 mins late to see me, he was disorganized. He didnt seem to remember any of the conversation we had in the hospital, and neither did I, because I was out of it on the drugs and only Chad had listened properly.

He just asked me if I had more seizures since the hospital and I told him I did. He seemed surpirsed. Then he asked what kinds, how long etc and seemed surprised again when I told him I am still having them daily and have had a few more Tonic clonics since the 6th.

He asked about family history and I got the chance to tell him about my mum (who he thinks has simple partials, as my mum also confessed she smells things burning that arent there, and has jerking while sleeping) and she got a referral to him.

He asked if I had any questions to ask him, and I couldnt bring myself to ask some of them! I felt embarrased and strange asking some of them. Then he upped my dosage to taking the 25mg of lamortrigine everyday, and made a new appointment for November 2nd at 11:30am.

He also didnt have my CT scan results on hand, so he will have those when I come for the next appointment, nor did he have my blood test results. So i had to tell him what the hospital told me. He also ordered an MRI and a Video EEG and a few other EEG things

I feel so stupid that i couldnt answer some of his questions and that i was too shy to ask my own! Argh!

 

[Cint]

Rae,

Sorry to hear the appt. didn't go so well. Was Chad or anyone with you? Maybe they could have asked the question(s) for you. Remember, no question is a stupid question, especially when it concerns your health and life. And it sounds as tho that dr. needs to learn some organizational skills. Shame on him.

 

[vapour]

why on earth would be be suprised you are still having seizures when you are only on 25mg on lamictal a day ? I had to be on 400mg a day ... 25mg is such a tiny starting amount because of the rash risk....sorry thats just ridiculous a neurologist would be suprised someone is having seizures when they are only on 25mg of a med that your supposed to be on at least 200mg of probably...plus other seizure meds (at least its that way for me)

 

[Rae1889]

thats what i thought too. But it seemed more like he was surprised that this was not an isolated incident of the grand mal, and that I was having the absences daily. He was interested tho that i did not seem to have auras anymore. Even on a small dose of lamotrigine, But that my tonic-clonic seizures have increased in frequency and severity.

They used to be around 1.5 to 2.5 minutes long and now they are between 3.5 and 4.5 minutes long and i'm biting my tounge more, and turning blue more often *I used to have short, loud gasping breaths when seizing, like the muscles in my chest were contracting and expanding pushing air in and out involuntarily. Now i hold my breath entirely*

Nobody came with me to the appointment *although my controller drove me there, sat in teh waiting room with me and then waited when I was in the office to drive me home.*
She is so nice! Of course me and her are the only 2 women in the office so we gotta stick tofether. But Chad works during the day, and if i take time off for appointments, my check sucks. We dont need both of them to suck.

 

[Nakamova]

Hi Rae --

Don't be afraid to ask your neurologist questions. Even if your neuro is dismissive (like "Diet? That doesn't help seizures") then at least you'll have a sense of where he's coming from. With my neurologist, I've learned to disagree, and challenge her when something doesn't feel right. If I didn't, then I'd be at a much higher and/or more expensive dose of meds then I need right now.

I am on Lamictal at 200mg/day. That's on the low-ish side, so I would expect that you would need to taper up to that level to get seizure control. How soon did your neurologist think you'd be up to an effective dose?

 

[Rae1889]

I'm not sure, but i have a feeling that he was thinking that I didnt really have seizures at all, maybe faking them, he just seemed like it was unlikely that I would have epilepsy. Yet when I asked him again for what I'm diagnosed with, He said the same thing. JME. and scarring on my right temporal lobe area. So he wants an MRI so he has a clearer picture of that.

I might have 2 types of E. One from head trauma and one hereditey. I'm glad its not a whole lot worse seizure wise than it is. But he just comes off as an a$$. He is very knowledable, and very impressed with my knowledge so far. Which is why i think he is uncomfortable around me. Because i know what he is talking about even though i am newly diagnosed.

 

[Nakamova]

Information is power! I'm glad you know what he is talking about. It's too bad it makes him feel uneasy. I wish everyone here could partner with an epilepsy neurologist for a month, and point out when the doctor is being less than helpful.

If your neuro prescribed Lamictal for your seizures, then 25 mg isn't going to cut it. He must know that. You do need to taper up slowly, so maybe he's taking it extra slow to make sure you don't have an allergic reaction.

 

[Rae1889]

Yes, he mentioned that too me when he gave me the options bertween Valproate Acid and Lamictal. I got all defensive first and told him i didnt want the evil rash. So He said that is why you need to go really slow no matter how much you wanted to get to. He said it didnt matter if you were on 300mg and wanted to get to 500mg, it had to be slowly.

I jst got the hiccups realy bad and now i'm jeking all ovetr! what theu hay!

 

[Nakamova]

Okay, take it easy, step away from the computer, feel better...

 

[Rae1889]

Not sure what that was. Still have the hiccups but the jerk thing stopped. kinda embarrasing cuz i'm at work. lol My head dropped and my arms flew up! almost like I had a rope around my waist and someone yanked on it to pull me away while i wasnt expecting it. only happened 3 times and some shakes inbewteen while i tried to type what was going on.

Hiccups suck... mine are loud and squeeky and totally childish. I keep geting looked and and then I laugh at some of the sounds! lol it sounds so funny. But the twitch was different.

 

[danjor]

I can understand where you are coming from. Doctors can be a pain eh? I had the hardest time when I was starting out getting myself to ask my doctor the questions I needed to. She also made it seem like I was faking it, and still does. I finally realized that I am the patient, I am the one that needs to get better, and its her JOB to make sure that happens. Don't be afraid to disagree when things don't add up and make sure that you know your health is number one. I am now seeing a new doctor (an epileptologist), so if things don't work out with this doctor it doesn't hurt to try another.

Hope everything works out!!
Jordan

 

[PhylisFeinerJohnson]

Rae, I really think you should find a doc who's more PRO-ACTIVE...who listens to you...who remembers what he said and prescribed. This guy sounds like a Class A jerk. An incompetant, to be polite. Clearly you need someone to take a fresh look at you and re-evalute both you and your meds.

 

[Chris515]

Yeah Rae sounds like you need a new doc... I wonder if I can get you in to see mine. I'm seeing him on the 5th so I'll see what I can do.

25mg is a low dose for Lamictal. It takes a while to up the dose though. It took me months to get up to a high level, but it works pretty good now. I'm at 550mg daily.

Take care... I hope you're doing well today. We're all here for you.

 

[RobinN]

We too have had our share of neurologists that were far from acceptable. I simply won't tolerate it anymore. Too much time is involved between visits and quality of life is reduced when you are in good care.

Have you made any changes to your lifestyle? It really can make a huge difference if you are serious about it.

 

[Rae1889]

We too have had our share of neurologists that were far from acceptable. I simply won't tolerate it anymore. Too much time is involved between visits and quality of life is reduced when you are in good care.

Have you made any changes to your lifestyle? It really can make a huge difference if you are serious about it.

what sort of changes are you referring too? other than trying to get a better sleep, than no.