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

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Ya when it's hot I have seizures I have T/c s when its hot. I am not on topamax any more. It did make me stop sweating. But I still would stink. How's that?lol it's good to get massage therapy during that time. It moves the toxins.My doctor did for me.
 
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

Thanks. The Topamax is not stopping me from sweating even though I have excessive sweating so could do with a decrease in sweating.
I already drank a lot of water before Topamax as I have excessive thirst (been tested for diabetes and thyroid problems, not got either).
Not got much choice but to stay on the Topamax at the moment till I see a decent neurologist or somebody that will actually prescribe something for the seizures so I don't have to stay on headache doses that aren't enough.
 
I have concerns about a neurologist of mine. She claims to be a specialist registrar in neurology in her letters to my GP, but I checked the GMC website and she is not on the specialist registrar!

Not quite sure what her qualifications are as they were not in English, I tried various translting websites without success. Does anyone know what "Lekarz 2006 Akademia Medyczna im Piastow Slaskich we Wroclawiu" means? Whatever that means that is her qualification. I searched her name (it is a unique uncommon name) and it was coming up with dentistry. ???!!!
 

Thanks. :) The website is confusing my stupid brain but the fact that she says she is on the specialist registrar when she isn't is enough for concern, that is fraud in my eyes, and serious fraud at that.
I tried the Google translate thing and all I'm getting for her is doctor, the translation isn't great though. Just had a thought. I typed neurologist and neurology into the translator and translated it into Polish and it's none of those words. So she shouldn't be practising as a neurologist!
 
I would double check everything, even ask whoever recommended her then bring her to the attention of the regulating body (college of physicians or neurologists)
 
I would double check everything, even ask whoever recommended her then bring her to the attention of the regulating body (college of physicians or neurologists)

I emailed her secretary but got an auto reply saying she is on holiday until tomorrow. I also contacted the GMC (General Medical Council).
 
I ask every Dr. what personnally what school they went to, and why. They usually love to talk about it unless they are in a bit of a hurry. questions, questions, questions. Take care of yourself.
 
I ask every Dr. what personnally what school they went to, and why. They usually love to talk about it unless they are in a bit of a hurry. questions, questions, questions. Take care of yourself.

There's no way my neurologists would tell me that information unfortunately.
Mine never want to even talk about medical problems, I thought a medical history was an important part of diagnosis, especially as I had a lump that in most cases causes seizures in later life (after age 15 and above), so it's no like it's not relevent, but I get comments like "It was superficial." because they can't be bothered to read it. I even hand them a sheet of paper with a one page paragraph detailing the lump and operation but still they can't be bothered to read it.
 
Maybe, just try it. If he or she won't talk to the head nurse or the director of the clinic they are a part of.
 
I'm with my 5th neurologist right now, my 2nd epileptologist. She has always been wonderful and we invited her to my wedding. I can tell you everything wrong with all of my other doctors.
 
Neurologist A - I was in an active seizure before appointment and a friend (also highly respected surgeon at same hospital said to call bc he would like to see seizure) so she and my hubby called on our way there. He was in his late 70s (set up by cardiologist the day before - think only dr available that quickly). He was furious we called while he was eating lunch. My friend contacted the cardiologist who insisted I go to ER and be admitted. Neuro told me at first sight "It's all in your head are you bi-polar" and went back to lunch, we went to ER. Saw him twice in 3 weeks, second time he was fired. Friend found us another dr that is a neuro/psychiatrist/epilepologist all in one, he was on vacation but agreed to take me. His backup was useless called in giant groups of drs who stared at me and then would say "You need Dr House".

Neuro 3 returned from vacation and loved him immediately. Insurance kicked me out of the hospital less than a week after he returned. He since realized none of the tests done or ordered were done properly and were useless including an MRI that was so bad it wouldn't have caught a tumor (infuriated him). He is amazing, very careful. I was so over medicated in hospital had to detox basically before cld retest and start over.

Neuro/Movement Specialist 4 - suggested due to myoclonus diagnosis. All my hospital records were sent ahead (800+ pages) he said he "didn't need that" had a seizure in his office. He looked at my cover sheet and told me my hysterectomy at 34 and being married/kids to early was cause and I needed therapy no meds. Even suggested we trash other doctors scrips now.

Ph.D Physchologist for brain damage testing- this is physical undiagnosed seizure disorder. See a psychiatrist to push epilepsy diagnosis.

Pschyiatrist- spent 15 mins total talking saw Neuro 2 report and said " He is probably right, tegretol is only working because its psychological" you prob just have somatic disorder

Oh and forgot 8 person psych panel at hospital that did extensive tests and interviews and came back I am normal no somatic disorder. But adminiting internist told me if drs didn't have answer at discharge they psych panel must be wrong.

Now confirmed Epilepsy (unusual manifestation) and myclonus. By #3 neuro/psych/Epilep who always believed it was just had trouble proving it.

As my surgeon friend says we are ALL different drs seem to forget that we aren't the textbooks.

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What is the difference between a Neurologist and a epileptologist? I have never heard of a epileptologist before.
 
a epileptologist specifically works on epilepsy. I'ts a specialist. Neurology is epilepsy plus other disorders of the brain. My epileptologist is retiring this year. He is like one of my best friends.
 
I really like my neuro and my GP. My neuro is the first one I have ever visited. My GP recommended him. I have to drive 120 miles one way to see him. He was a neuro for the Air Force. He listens and wants to know about everything. I always get lectures from him about my stress levels and he tells me to do stuff just for me. :soap: He scared the dickens out of me with his driving lecture (Montana's laws are very loose). He had me try Topamax as my first med - migraines and partial seizures. I was ready to try to hang in there with all the side effects but he said no way and lowered the dose and then took me off. He has me ramping up on Lamictal. Even without "proof" he says that I have temporal lobe epilepsy. I see him every two months and usually returns my calls in 24 hours. He has an ego but is very compassionate. He made me laugh after I had my first Alice in Wonderland complex partial - losing time really freaked me out. He called me "Alice". It is a good thing that he is a couple years younger than me (won't retire anytime soon). I hope he likes Montana and stays in the area.

My GP is great; he is a family friend. We have his personal cell on speed dial. My DH is his mechanic. He was an Army doc. He got me through my colon cancer. I won't see anyone else. He is very methodical and doesn't make snap decisions. If he is unsure and time is not an issue, he takes a week to call around to his specialist contacts. When I presented with seizures, he called psychiatrists and neurologists to see what they thought. He has never referred me to a shrink (neither has my neuro). I am really lucky to have both these guys on my side. :woot:
 
Now that we have some money to do it. I went for it because of his interment ant explosive disorder, They are saying a dog will work better for him. What do you guys think?
 
Weather doesn't seem to affect my E


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I love my epileptologist. I have been seeing him for over 17 years. He has been thru the birth of my child, brain surgery, brain infection, my husband when he beat me up. My divorce, boyfriends to get away from. He's my trusted buddy. He even took care of Alex for a while. Now he is retiring. So now I get to choose a new doc at Harborview. I did because I know him well. But...I'm gonna miss Dr. Allen Wilensky.
 
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