How to find a good epilepsy doctor?

[Mike758]

I've been treated and seizure free for a year, and I'm currently on my second neurologist at my local hospital. My first neurologist actually specialized in epilepsy, but wasn't very good. After my first tonic clonic seizure, she treated me for Lyme disease even though I tested negative for it and I had symptoms of what I later found out were partial seizures starting a year before. She laughed at me when I described that and didn't take me seriously. I switched neurologists after my second tonic clonic, and this one was just a general neurologist. At first he was very reassuring and he cured my epilepsy, but as of late he's been extremely rude, doesn't take me seriously, and doesn't seem to know what he's talking about. He said to call if I have issues, but when I call, the receptionists are very rude and he never calls back. On my appointments he tries to rush me in and out and is very rude. I also mentioned I had a migraine once, and he said people my age shouldn't have one even though many people I know have them. I've been having what I believe are anxiety issues from the meds, and they simply told me to increase the Keppra, he just doesn't seem to know what he's talking about.

Anyway, I want to switch neurologists again, but I don't know how to find them. I tried googling and couldn't get decent results, and my pharmacist recommend one that specializes in epilepsy, but he's got some of the worst reviews I've ever seen.

 

[marika853]

Good Luck on trying to find a good neuro! I have only seen my new one once since I started with him in Jan. I had an eeg in June, of which he still has not seen me to give results. I had an issue back in June and called the office. They told me he can't see me for 2 mts. I told them it's kind of serious and can I see one of the other drs. in practice. "we don't do that." Thank God for my gp who saw me right away and gave me some meds. SSSOOOO! Like I said, " Good Luck".
I'm scheduled for Nov. 6 to see the neuro for the results of eeg. Hope there's nothing wrong??!!!
M

 

[Tez_20]

I've been treated and seizure free for a year, and I'm currently on my second neurologist at my local hospital. My first neurologist actually specialized in epilepsy, but wasn't very good. After my first tonic clonic seizure, she treated me for Lyme disease even though I tested negative for it and I had symptoms of what I later found out were partial seizures starting a year before. She laughed at me when I described that and didn't take me seriously. I switched neurologists after my second tonic clonic, and this one was just a general neurologist. At first he was very reassuring and he cured my epilepsy, but as of late he's been extremely rude, doesn't take me seriously, and doesn't seem to know what he's talking about. He said to call if I have issues, but when I call, the receptionists are very rude and he never calls back. On my appointments he tries to rush me in and out and is very rude. I also mentioned I had a migraine once, and he said people my age shouldn't have one even though many people I know have them. I've been having what I believe are anxiety issues from the meds, and they simply told me to increase the Keppra, he just doesn't seem to know what he's talking about.

Anyway, I want to switch neurologists again, but I don't know how to find them. I tried googling and couldn't get decent results, and my pharmacist recommend one that specializes in epilepsy, but he's got some of the worst reviews I've ever seen.

Hi Mike,
Regarding your first neuro and diagnosing you with Lyme Disease you can test negative and still have it but you need to be retested regular, as I have Lupus and both Diseases cause seizures.
I've never heard anything like it in my life how you've been treated it's disgusting and to laugh about migraines which happen with epileptic's is bad and they're not like something coming lightly either...the pain can become quite unbearable.
I'm on keppra and to tell you just to raise it that's no good...the neuro should be stating the mg and working with you...i'm on keppra myself and my neuro as tried twice to work me to the highest but for some reason I get stomach upset but as soon as I drop that tablet I go back ok.

 

[valeriedl]

The first neurologist I had was great but he moved do another hospital. Luckily the second neurologist, he's the one that I still have, is also great.

When I first started seeing my second neuro I'd see his nurse practitioner every other visit. The lady was a real jerk and that's the most polite word I can use. She told me that the only reason that I was having seizures was because I wasn't taking my meds, which I do, and didn't work with me at all. I blew up in the office and told them that I wasn't ever going to see her again - and haven't.

I've had other medical problems, mostly my back, that I've gone to so many drs that I've lost track. I finally found one who helped me out a ton. It only took about 9 years. I hope you don't have to go through all of that to find a good dr.

 

[Tez_20]

The first neurologist I had was great but he moved do another hospital. Luckily the second neurologist, he's the one that I still have, is also great.

When I first started seeing my second neuro I'd see his nurse practitioner every other visit. The lady was a real jerk and that's the most polite word I can use. She told me that the only reason that I was having seizures was because I wasn't taking my meds, which I do, and didn't work with me at all. I blew up in the office and told them that I wasn't ever going to see her again - and haven't.

I've had other medical problems, mostly my back, that I've gone to so many drs that I've lost track. I finally found one who helped me out a ton. It only took about 9 years. I hope you don't have to go through all of that to find a good dr.

Hi valeriedl,

My first rheumo was one pain in the butt...if I told him meds was giving me side affects he wouldn't have it, until I took ill with them and half the time all he used to keep mentioning was me being serious and never smiling...I said what do you expect when I can hardly walk a distance before going done having a seizure, it's like they want you walking about like a total clown but since then I dropped on a great brain surgeon and now under a specialist he recommended for the past 16yrs.

 

[Tez_20]

Hi Mike,

Have you managed to find another neur more suited and nearer to you ?

 

[Mike758]

Hi Mike,

Have you managed to find another neur more suited and nearer to you ?

Yes, I finally have! I found a doctor at University of Penn who specializes in epilepsy. I have recently started having partial seizures again, and Im trying a higher dosage of keppra which is recommended by my current doctor (not future one), which did work last time. Still though, I am concerned about that and some other issues like extreme exhaustion, anxiety, and ringing in ears that hopefully the new doctor can help with.

 

[Tez_20]

Yes, I finally have! I found a doctor at University of Penn who specializes in epilepsy. I have recently started having partial seizures again, and Im trying a higher dosage of keppra which is recommended by my current doctor (not future one), which did work last time. Still though, I am concerned about that and some other issues like extreme exhaustion, anxiety, and ringing in ears that hopefully the new doctor can help with.

Hi Mike,

I am pleased you've found a new neuro...I've been tried on the high dose of keppra which was just one pill and I had to knock myself back off nausea and feeling sick terrible...there's no harm in trying being as your on them already and if you notice any affects get intouch with the specialist straight away.

Mike anxiety can come from the seizure, ringing in the ears also plus it could be possibly vertigo...there's many issues on these problems, so please do mention these besides to your neuro