My Epileptologist / Neurologist ...

My epileptologist / neurologist is ...

  • one of the thousand points of light

    Votes: 69 41.3%

  • not a good listener, but cares

    Votes: 34 20.4%

  • very career oriented and busy

    Votes: 64 38.3%
  • Total voters
    167

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!

It used to make me mad. But its funny now. My docs if they notice something they look at me like they are apes. I tell them to knock it off. lol They tilt there heads. I don't know where they learned this but it cracks me up. Teresa
 
Birdbomb said:
Yeap! And I took myself off dilantin while under her care. She has a different attitude with me than she did you.:pfft:

I just saw her a few months ago to get approval of this one particually nasty medicatiom for my RA. Told her even if she didn't approve, I was going to take it anyway. (Unless you live with the kind of pain RA causes, you won't understand my reasoning,) but she just said if there were anymore sz, just come back.:tup:

Then sprinkled holy water on me, kissed my feet and blessed me.:star:

Well, maybe not all that, but she understood my pov.

She was your worst but has been my best. What does that say about Las Vegas doctors? :eek:

Picking an epi is a crap shoot!

9ca05fdd.gif
Click to expand...

Hey in Vegas Birdbomb! I just moved back to Vegas about a month ago from dreary Erie, PA, the mistake on the lake. I've only been here for a few weeks, and am interested in finding an epileptologist here in Vegas. All Neuro's keep doing is giving me drugs and tell me not to have seizures. I'd rather have someone treat me for my seizures, not just the drug thing. Do you know of an epileptologist here in Vegas anywhere? If so, can you post it here or send me a message?
 
danjor said:
My neurologist is horrid. I really want to switch
Click to expand...

I hesitated because I was scared of switching neurologists but once I did I wondered why I'd hesitated. After that I just kept switching until I found one I liked (drove my GP nuts).

Don't be scared to switch if you don't feel you're properly benefiting from him/her. Also don't let the neurologist scare you into not switching if it's what you want to do.
 
I've probably had 8 in the past 31 years and most had the same cookie-cutter, know-it-all mentality. However, I absolutely LOVE my current Epileptologist.......but so does the rest of the world. He's so well respected that he has been interviewed in trade publications. The man will spend an hour with me going over my meds. But that's if I have 3-6 months to wait for an appointment in the first place! I'm in the middle of a major crisis with my meds now......Lamictal Rash; had to be pulled off of it and he gave me a new/old med (Phenobarbital) to switch to with Topamax and a 3 week plan for the change.....all unsupervised medically. I guess he figures, I was on Phenobarb for 17 years before so I should be fine. Problem is, now my body is rejecting the Topamax and I can't get an appt. with him for 7 weeks......even in an emergency. I'm in the hospital with massive reactions to the meds and all the ER docs can do is give me giant Prednisone prescriptions and an Epi pen in case I feel like I can't breathe again. We've tried other Neuros, buts it's all the same........too bad if you're urgent........Neuro and Epilepsy is a casual specialty. My MD is doing what she can with what limited knowledge she has, but for the most part, I'm dictating MY medical care because I simply can't get an earlier appt. Thank God I have insurance this time or they wouldn't even consider seeing me!
 
Neuro #1- told me I had epilepsy, shoved a load of leaflets into my hand, told me to give him my driving licence RIGHT NOW,when I asked how to deal with epilepsy a 2 week old baby, an 18 month old toddler and a 5 yr old with medical issues he just said "how should I know, my next appointment is waiting". went home and started on the lamotrigine he gave me, did't even come to see me when I got SJS and had to be took off the meds. Didn't go back to see him, discovered 2 yrs down the line that he was a UROLOGIST with a 'special interest' in neurology(not trained in it) who was doing it because the last Neuro had been sacked by the primary care trust...

Neuro #2-was about 110 yrs old and wore a bow tie. He told me it was all in my head (DUH:roflmao:) that it was non-epileptic seizures (without even doing an MRI or EEG) and there was no family link with my nan's seizures and that "it was my fault I was having seizures as I had 3 kids with 3 different men" now I'm not someone who cries easily but he had me in floods of tears and my ex-partner, who is the most mild-mannered person I have EVER met nearly punched him, he was that nasty to me. I was sent to him as the PCT was no longer using the UROLOGIST .he worked at a private hospital turns out he was the neuro that the PCT had sacked but they were sending patients to his private practice as they had no neuro....backhanders or what??!!

Neuro #3- he is quite aloof, his bedside manner is non-existant, but he is very knowledgable, and he does take notice of what I say. problem is tht he is being seen by most of the people with epilepsy on the south east of england, so you only get to see him once a yr. He did MRI and an ambulaTORY eeg, SAID IT'S DEFINATELY epilepsy and it's in my right temporal lobe and told me what types of seizures I am having. I have to travel 70 miles each way to see him.

Which brings us to my GP....he is absolutely wonderful, when I was put on topamax by the neuro last yr and had vision problems with it (have permanantly lost my peripheral vision) my GP took me off it, and he listens to me, and usually agrees with me on whether my meds need to be upped or not. I am seeing him on monday as my next neuro appt. isn't till october, and my seizures have got so bad that something new needs to be done. I can't up my dose of gabapentin any further as I'm already on 1200mg/day, but last time i saw the GP he asked what med I WANT to try as an add on, and he will ok it with the neuro!! I'm glad at least the GP listens to me and is very helpful, he researches everything to do with E now, and he has suggested I decide what meds I want as an add on, and he will just make sure there's no interaction with the gabapentin! between my wonderful GP, and my brilliant but often unavailable neuro, I'm finally hopeful of getting somewhere...
 
Last edited:
I have a different approach with docs. I figure they work for us, since we pay them and should be alert to our needs. Not their own.
After being in status for several hours and spending 12 hours in the ER. I had an emergeent appt with my neuro of 10 yrs. He is an epitoligist and an attending at the hospital I work for.
He had a very young and pretty med student in with him. I can tell he was trying to impress her but didn't review my chart.
Well Mr. Rich we can always start you on Lamitcal.....On it now doc
and if adding a new medication doesn't work their is something called the Vagal Nerve Stimulator.....Number 17 doc
and if that doesn't work, we can always try brain surgery......Got that tshirt too doc.

LOL
 
My doc turns into a different person when he has a resident along - any resident. So I asked that they not come into my appointments. Plus it leaves more time for my issues. He doesn't spend 10 minutes out of my 20 minute appointment going over my history with the resident, and explaining why he took what actions with me.

Mine's a jewel when he's not busy, but when he IS busy, I get really frustrated. I feel like he doesn't listen, and he discounts me and what I have to say. When that happens appointment after appointment I swear it's the last time I'm going to see him, and start researching other docs. I understand he has a department to run, but sheesh... Then, the pressure lets off on him and he's his usual jewel-like self. Great listener, great communicator, good decisions regarding me, takes plenty of time, explains the long term plan. Just love the man and the care I get when he's like that. Then I stick tight right where I am.

Did I mention he's smart as blazes? In the end, that's what matters most. The guy really is brilliant. I have a tough case - not straightforward - and I'm glad he and his very big brain are taking care of me..
 
CuHead said:
My wife and I have lost much faith in doctors. We were Very Lucky to find one endocrinologist who helped us (at Georgetown University Hospital).

I thank God she saw us, because the GP would not give us a 'recommendation'.

As I understand it, epileptologists/neurologists prescribe mainly 'for the brain'. My wife and I still need to find a specialist who can help find a cause.
Click to expand...
Did you happen to have Dr. Melissa Neiman at Georgetown?
 
You forgot a option for voting. Mine seems to be a pill pusher. It's always try this then that. I tell her something that worked before (all natural plant) and I'm still getting darn pills.
 
I've had 3 different neurologists, and it's weird how different they are.

The first was the one I had from the time I was a baby. He was nice, yes, but not really good for much beyond that. I remember asking what type of seizures I had, and the only thing he ever told me was that I DIDN'T have E, but the real name was too long for me to worry with. After going thru one problem then another, one RX then another, and 10-20 seizures a day, I realized he was way over the top blissfully ignorant. He literally told me 'Oh you're fine. You could be the first woman president someday.' Idiot.

My second neuro was really kinda cool. Immediately diagnosed me with E. He'd let me find the right dosing schedule that worked best for me. When the time came, I'd wean myself off it as need be. He actually worked with me, and when I said 'No more med changes for a little while. I need a break.' He listened. He never found an RX that actually worked, though. I had to change because his medical license was recently revoked, something to do with not filing some papers.

My third neuro, the current one, I'm still trying to figure out. My first visit, he had no bedside manner whatsoever. Acted pissed off at whatever I said, but wouldn't ask me any questions. I chalked it up to him being young still. Second visit, he prescribed Vimpat, which worked better for me in the first 48 hours than everything combined of the last 15 years. That made up for everything, he can be an absolute jerk if he's smart. I've been going to him around 6 months now, and today he told me, I realize your first few visits, I didn't get that much information. It's looking up.
 
I finally found this Dr. when I was 31 and I am 46 now. We are good friends. He treats me like his own daughter. And is not afraid to reprimand me when I start acting silly. He has been through thick and thin with me. Like when I became pregnant, and later when I got hit by my husband and he told me to get away from him. Through my cancer stuff and surgery and now another one. He is a good friend. He is a part of my family. He tells me how much my mom loves me.
 
i went through four others before i found Dr. Sheryl Haut at Montefiore Hospital, in the Bronx. She's amazing
 
In the bronx, really? My brother lives in New York and was looking for an epileptologist for a long time or a neurologist. But they kept putting him off.
 
She is really open to anything. She was the first dr that was willing to even think of my overheating episodes as possible seizures. if not for her, i would still be having seizures at school EVERYDAY and i would be sleeping all the time. she is the director of the neuro/epilepsy unit at montefiore. the whole unit is so nice and really helpful
 
gr33nr0se said:
She is really open to anything. She was the first dr that was willing to even think of my overheating episodes as possible seizures. if not for her, i would still be having seizures at school EVERYDAY and i would be sleeping all the time. she is the director of the neuro/epilepsy unit at montefiore. the whole unit is so nice and really helpful
Click to expand...

I often get too hot despite cold or normal weather. It feels as if I am burning. Could this be a form of seizure?
I also have excessive sweating.
My thyroid levels are normal (although they were done at a hospital that made s many mistakes with my MRI scan it's unbelievable!).
 
topamax made it ALOT worse for me. it stopped me from sweating and i had a small heat stroke during a big winter storm. i am still finding things that help me, but so far, i haven't found much. if you stay on topamax, DRINK A LOT OF WATER!!!! it may help because it will make you get rid of toxins that are being stocked up in your body
 
You must log in or register to reply here.
Back
Top Bottom