Do Neurologists Belong to the Forums?

[cuppycake21]

Hi Everyone-

I was wondering if any neurologists/ epileptologists / researchers regularly visit the forums? If so do they indicate that our experiences, observations and personal research have any bearing on the way they practice?

This past week I completed a 5 day vEEG with no seizure onder: This is a new Dr. and frankly, I don't like him at all. He doesn't answer questions, didn't read my old records or ask much in the way of a history. He requested this study and then did not actively pursue a seizure. I asked why the protocol was so passive (no photo stimulation except for the first day) and he didn't have an answer other than "this is how we do it". The first three days involved normal sleep, normal eating, one photostim/hyperventilation session and nothing else. Finally I asked to leave early and he wouldn't discharge me..he did shave one day off because I was fed up. He decided I had generalized epilepsy without witnessing a seizure. Every other Doctor for nearly 30 years has agreed that I have focal onset (including Mayo Clinic).

What really frustrated me about the visit is that I told him in no uncertain terms that I didn't want to try Keppra. I had a bad reaction from my last medication change that involved some emotional side effects. I didn't want the Keppra "rage". In order to benefit from the hospital stay in some way I asked him to switch the meds while inpatient (which we had agreed upon at the appointment). He claimed the only medication he could put me on while in the hospital was Keppra (huh?). So he kind of strong-armed me into trying it. But he kept going on about how 80% of his patients are on it. This didn't sit well with me considering there are many different treatments and differing types of seizures. When I mentioned that I'd heard bad things about the side effects in the literature and on Epilepsy Boards he became VERY arrogant. He commented that I shouldn't listen to people on Epilepsy Boards because they're complainers. His total disregard for our desire for our health, safety and desire for a cure just totally soured me on him. I don't believe he's competent and want to seek another opinion. :soap:

What are your thoughts and opinions? Do you think Doctors read any of this? Or do you believe any of them translate what we tell them in the office toward looking for better answers?

 

[Bernard]

CWE has had several doctors (some neuros, some not) register accounts here over the years. Most of the time, they came here for a specific interest and did not continue visiting once that interest was satisfied. Very few of them posted more than a couple of posts.

~~~

When Stacy and I didn't like a neuro, we stopped seeing him and found another one. Luckily, we can do that here in the USA.

 

[Cint]

I don't know about how many neurologists come here to CWE other than what Bernard said, but, IMO, if you're having problems with this arrogant doctor, then time to see someone else. A lot of us here have had much more experience with the meds than any experienced doctors. What the hell does this doctor think the Drug Studies(which I was part of once) are for? We are the guinea pigs. Does he want to be called idiot or doctor?
My epileptologist knew that if the medication didn't set well with me, I could refuse to take and we would try something else. You don't have to be a part of that 80% of his patients who take that one drug for his pocketbook.

 

[masterjen]

I don't think you will like my answer, but here goes.
I think neither of you respected each other by the time you ended your hospital stay, and you didn't like the doctor from the get-go. Your description of how the video EEG was conducted is typical. For the first couple of days doctors want to see what kind of EEG and seizure activity occur under normal circumstances (hence the normal sleep, eating). I take it the last 2 days involved changes, like sleep deprivation? What were these changes from your norm? It is possible that the fact you left early cheesed off the doctor, because as you have read on this site so often it is in the last day or two of a VEEG that a seizure finally occurs, in part because the effects of the change from your norm build up
One hyperventilation session and one photic stimulation session is common, but may have been more worthwhile doing when your body was under some other stress (eg. sleep deprivation) as well.
You say they didn't do anything to actively induce a seizure. What did you expect them to do, based on what was said at your pre-admission appointment with the doctor? There is not really much you can expect them to do as they don't know what your triggers are. After the first 3 days of recording you under normal circumstances, you could have started to do things in addition to what they did to hopefully trigger a seizure based on what your triggers are (sleep deprivation, caffeine, too much sugar, stressing yourself out mentally, etc.).
Maybe this doctor really isn't up to par, but I get the feeling that the lack of respect went both ways in the end. Also, I've learned that sometimes the doctor whose opinion is different from others is the one who is right. Have you had the follow-up to learn about the EEG results from your hospital stay? Maybe something was learned even though you did not have a seizure.
Also, I'm sure you have learned from reading around that people react to medication in very individual ways. There is no guarantee you will get Kepprage. I sure didn't and there are others here who can say the same thing. You know how it goes: people are more apt to complain about something than they are to compliment something.
Best of luck to you in finding a new doctor.

 

[seagull]

They do read forums but taking notice is another matter

 

[Bidwell]

I think masterjen's post is one to keep in mind because she is defining what is the ordinarily expectable unfolding of that situation. For instance, she points out why the doctor would be frustrated by a patient who leaves before his study has reached its conclusion. At the same time the doctor's disregard for the important information the patient has given him [about KEPPRA] is shocking and I admire cupcake21 for eventually walking out. GOOD FOR YOU, cupcake! The question I have is whether this doctor's arrogance is part of a diagnostic style that some neurologists seem to think is appropriate given their scientific mission. If so, I do not understand why the profession itself does not discipline its own. The profession itself needs to be concerned about its members' behavior and needs to demand standards of behavior on the part of its individual members that CLEARLY takes into account that THE END DOES NOT JUSTIFY THE MEANS. In this case, I think the doctor was behaving as if The end DID justify the means. He did a little power play because he could! And as masterjen says, he may be the lone voice that has the "right" diagnosis. Was that an OK way to do it? Surely there are other ways.

 

[masterjen]

The question I have is whether this doctor's arrogance is part of a diagnostic style that some neurologists seem to think is appropriate given their scientific mission. If so, I do not understand why the profession itself does not discipline its own. The profession itself needs to be concerned about its members' behavior and needs to demand standards of behavior on the part of its individual members that CLEARLY takes into account that THE END DOES NOT JUSTIFY THE MEANS. In this case, I think the doctor was behaving as if The end DID justify the means. He did a little power play because he could!

I agree. Too often some doctors (especially specialists, I've noticed) see themselves in a position of power, and almost strong-hold their patients into following a particular treatment regimen. I am willing to bet that whoever oversees these doctors does not want to step on their toes, so the doctors continue to get away with these types of tactics. I have had a few like this in the past, but currently have ones that actually help me be involved in the decision making processes. I don't think these types are especially common, and I wish we could somehow change this to make what is uncommon into the norm.

 

[Ruth]

I am on Keppra and I don't have "rage". In fact it was years before I had any problems with Keppra. Keppra and or Gabapentin (Neurontin) can cause kidney damage after many years. I don't know which one is the cause.

My neurologist told me to take Vitamin B Complex with the Keppra.

Look up any medicine on the internet and you can get all of the side effects. All medicines have side effects. I have had epilepsy for 60 some years.

 

[marika853]

I too have been on generic Keppra since my diagnosis in 2006. I do not have any rage. But I always tell everyone that I am one of the lucky ones. I am well controlled on it but still worry about the long term effects. I tried to get off just this summer and after 25 days had 2 seizures in half hour. Hospital put me back on Keppra. I'm having a 24 hr. eeg done on Tuesday but doubt that they will find anything significant. I just have to accept the fact that I have this and be happy that the Keppra controls it.
Good Luck to you!
M

 

[Ruth]

Yes, I accept the fact that if a medicine works take it. I have status epilepsy, so I quit the medicines and I die from my seizures.

Think Positive!! The doctors do the best that they can, for the most part. They don't know if a medicine is going to react one way or another.

 

[cuppycake21]

Thanks to each of you for taking time to reply. I didn't really explain the entire experience. I feel a little defensive because I know I acted fairly. Maybe this will shed some light on the situation.

I did walk into the experience with apprehension; but no disrespect. By agreeing to the vEEG I was placing faith in my new Dr. But there were red flags that concerned me. I am a fairly thick skinned person, but several times during the consult he was very condescending and disrespectful. My cheeks were burning, but I let it slide. I'm not in the habit of telling people off.

His office staff was very disorganized. They called 5x to reschedule the EEG, forcing me to stop Graduate School for this semester (because they kept changing the start date). I literally didn't know until 7 am the morning of the study. Again, I was compliant.

His nurse called me with MRI results. She said there was an abnormality (which I've never had). When I asked her to explain what she'd read, I was told she didn't understand it. So I put in a request for him to call me..which he NEVER did. When I Googled it (what a blessing and curse Google is), it said I had premature Alzheimer's. This scared me to death because I had two Uncles with it and currently have two Aunts in Assisted living with the condition. I told him I was worried over my memory and didn't know if it was "Depakote Brain" or something more serious. I waited three weeks for the EEG, placing faith in his method. On Day One, I asked him about the MRI results to be told he couldn't remember.

As far as standard protocol, I've been fortunate enough to go to Mayo Clinic 3 times. I trust the methods of the best Neurology Department in the Country over a small town Doc. Even the EEG's I've had in Milwaukee involved photostimulation/hyperventilation several times each day. He never took me off my medication throughout the study either. And yes, I took responsibility to stress myself. I stayed up all night, had family bring me candy and soda and wrote in a journal about stressful things. But having a hospital bed, nurses and being on my meds trumped those stressors.

Blowing off steam in here does not mean I blew off steam at him. It wasn't until the 3rd day that I mentioned frustration to a nurse who was helping me to the bathroom. She whispered in my ear that she stopped using him as her neurologist and went elsewhere. She talked to her supervisor and several nurses came in later. I wasn't ranting. In fact, the first thing I said was that I didn't want to be difficult. I just wanted to have a seizure. Every nurse told me at some point after that how easy of a patient I was..and I was. I rarely asked for anything, always said please and thank you, etc.

Discharge was supposed to be on Day 6. It happened late on Day 5. Day 4 I asked him if we could do more photo-stimulation because that is a big trigger. Instead he spent most of the time talking about insurance. So yes, I was irritated. He still hadn't looked at my MRI, he talked over me when I asked questions (guessing the questions -usually incorrectly) and nearly every day screwed up my name and specifics. He even (seriously) suggested that my Dad, who was visiting, see a neurologist (because of his gait). He had literally diagnosed him with Parkinson's Disease 3 weeks earlier (which is how I got my dad to see a neuro - by agreeing to go as well).

So in the end, I was compliant. I may have asked questions but I never ranted. Truthfully, he had no reason to disrespect me as I always maintain composure. And with the perspective of hindsight, I'm proud of how I conducted myself; but no I don't respect someone who disrespects me. Especially when it's my life at stake and I'm paying their salary.

 

[Bidwell]

Cuppycake, Thank you for writing your post. I did not even finish reading it before I was in tears. This is a horrific account and you carried it off with great self respect. Nobody could have done any better. NOT ME, and that is for sure. I am just so sorry.

I wrote the first post while I was speculating that your neurologist was so arrogant because he had given himself professional license based on his notion that he was conducting a Pure Scientific Procedure and who are you? How dare you come along and interfere with His Work. I thought that from HIS point of view as an "impeccable scientist" -- he would be pleased with himself for making The Correct Diagnosis. He could be proud of himself -- the patient be damned. I have experienced some of this sadism that flies under the name of Science and have been trying to wrap my mind around the words that can help me in the future. I don't ever want to be at the mercy of these s.o.b.'s again.
I have not recovered from the upset of a VEEG in July that was full of unacknowledged abuse [and I call it abuse even when nobody else does] such as you experienced. It is a different story, of course, but the disorganization of the office, the arrogance of the neurologist is the same. I did not end up the same person.

Take good care of yourself. I am going to cool down and then I am going to read your whole post.

 

[resaebiunne]

I think you need to be more open minded. Writing off Keppra because of "Kepprage" is being close minded. Until you try the medication, you have no basis for writing it off in that manner. I am on a "full dose" of Keppra (3000 mg a day) and I have no "kepprage". If you have concerns about the professional attitude of the staff for the hospital that you visited then you have a complaint with the hospital, not the doctor.

 

[AlohaBird]

Cuppycake21

CWE is a place where you get unconditional support, caring, and sympathy. We cheer each other on when things go right and pat each other on the back when they don't. And we let each other vent as needed to maintain sanity

followed by a big :hugs:

I want you to know that you are far from being the only one who has had negative experiences with the ones we entrust with our health. FWIW I think you handled a very difficult situation beautifully.

We do care and we do listen.

 

[resaebiunne]

Sorry for the bad introduction. Please don't let my distasteful post scare you off!

Welcome to the forums; I hope you find what you are looking for.

 

[valeriedl]

I love my neuro but I used to see his physicians asst every few visits. She was a real b****! She didn't listen to anything I had to say. I told her that either the meds or dosages of them I was on weren't helping. Her answer to everything was just "You're not taking your meds! You need to start taking them and then you won't be having these problems." My mom and husband would go to visits with me and tell her that I did take them, I even had an alarm on my phone to make sure I took them and took them on time but she didn't believe me. I just wasn't taking them.

She never did any blood work or any sort of testing to find out if everything was right. In general the visits with her were just writing me out prescriptions and tell me to take them.

I blew on my neuro's secretary telling her that if I ever had to see the physicians asst again then I was going to get another neuro. Haven't had to see her since then.

If your neuro doesn't want to take the time for you then it's probably time to start looking for another.

 

[MichaelJO7]

If so, I do not understand why the profession itself does not discipline its own. The profession itself needs to be concerned about its members' behavior and needs to demand standards of behavior on the part of its individual members that CLEARLY takes into account that THE END DOES NOT JUSTIFY THE MEANS.

I agree.

Aren't we tired of being told we are the problem?

 

[Blonde Angel]

The bottom line?
One will meet the good health professionals and not so good.
Move on and find the professional that works for you.

 

[KarenB]

Sounds like your new doc is an insensitive jerk, but he might be on the mark with Keppra.

About Keppra -- our personal experience wasn't good. It didn't work for the seizures and it caused depression and Kepprage.

However, Keppra works wonders for many people with epilepsy, and many have minimal side-effects.

Every AED out there has side effects -- and most AEDs have far worse side effects than Keppra. You mentioned Depakote -- that one can cause liver damage, hand tremors, cognitive deficit, etc.

That's why doctors like Keppra -- it's not as harsh on the bodily organs as most other AEDs.

However, the reason why your doc wants you to try Keppra is probably because of your issues with memory and early Alzheimers. That's one thing Keppra is especially good for! Here's some studies on how Keppra (Levetiracetam) has been helpful with memory and dementia:
http://www.peoplespharmacy.com/2015...everse-memory-problems-leading-to-alzheimers/
https://www.ucsf.edu/news/2012/08/12481/epilepsy-drug-could-help-alzheimers-related-memory-loss

 

[MuayThaiFighter]

Cuppycake21

CWE is a place where you get unconditional support, caring, and sympathy. We cheer each other on when things go right and pat each other on the back when they don't. And we let each other vent as needed to maintain sanity

followed by a big :hugs:

I want you to know that you are far from being the only one who has had negative experiences with the ones we entrust with our health. FWIW I think you handled a very difficult situation beautifully.

We do care and we do listen.

This, :clap:

Advocate your health and ask questions with these Dr.s in my opinion. If they act rude, that's on them. Also, he must not read the countless posts for inspiration and positive thinking/acting.