Questions for the doctors, visits to

[Mr. Pibb]

So yo are going to see the doctor for the first time and you don't want it to be one sided are thier any specific questions that you ask the doctor so that the visit is not, hi see that you have E are on these meds they work for you here is the script see you in six month bye. This has gotten to be the way that the last couple of vists have gone for me aside for him suggesting VNS . I have made calls to visit Mayo and would like to be able to ask the right informed questions so that we all get the most out of my visit. appointment date has been set so this is a go.
Jerry

[skillefer]

I asked my neurologist recently about some of the alternative treatments talked about here. My neurologist sat and listened, and then told me that a good multivitamin and folic acid were good for me. He also said that the EEGneurofeedback had had some good results in certain patients. The rest he wasn't too impressed with.

[BuckeyeFan]

Take your questions in writing. Start your list now and add to it whenever you think of something new. Also, try to give them as much history as possible, including seizures, meds, side effects, diet/schedule changes, stress/emotional changes, etc...

When the doctor comes in, engage him in conversation, don't just let him talk. Also, ask him to respond to your key questions in writing so that you 'here what he is saying'. Have your spouse come with you into the exam room.

My last neurologist appointment was so brief, I didn't even want to pay the bill (not normal for him).

[Mr. Pibb]

Mayo has provided a really neat chart that you can fill in so that past history is recorded so that all can have that information in front of them. My mother and Father were also of great help with the past history so that will be a plus going into my visit. I have gotten all the medical records also those that are pertinent to the issue at hand and those that are regular visit checkup. Seizure history has been recorded so that they have an ideal of past history some of it is more or less month and year not specific date something that will be more accurate in the future I am going in with a positive outlook to the whole deal it's just that when I talk to people in general that I come up with questions or comments that I either could have worded better or questions that pop in my mind after the fact but are important to the issue just don't want to go there and come back after and then come up with that one question that could change something I realize that many of their test that they take will answer question irregardless but just the same i don't want to look as if I am not prepared for what is to come whatever the final result
Jerry

[RobinN]

Some suggestions that I would ask for if I had to do this all over again:

Essential Elements test
Test for Metallothionein dysfuntion
Test Amino Acids
Toxic Metals test - should be hair analysis (blood only shows recent)
Test for Celiac - or simple food allergies
Comprehensive Metabolic Panel
Thyroid Panel

You could ask about (doubt they will suggest it):
Dietary changes
Neurofeedback

Ask about vitamins such as:
Taurine
Omega 3
selenium
Vit B
Vit D
Vit E
COQ10
magnesium

My best info is the calendar I take with seizures, dietary challenges, stressful events , and anything else I think is relevant. It has come in handy more times than not.
Take recent blood work, so you can compare. Ask why numbers differ (if they do).

Ask for new EEG, new MRI, MRA if it has been a while since the others. Once again a comparison can be made.

This is just off the top of my head for now.
I would read through the archives here at CWE, especially in the Library. If something rings a bell with you and makes you say hmmmm, sounds like me, then write it down and tell the doctor why you made the connection.

[xenome]

Whenever I see my neurologist, she just changes the settings of the VNS device in my chest. It sucks paying for her to just do that so...

I decided to ask about neurofeedback.

I went into her office and told her that my meds dont work and the VNS helps some but I suggested that neurofeedback may be the way to go.

She says,"Neurofeedback? Whats that?"

[RobinN]

Sounds like you have a report to write.

[xenome]

Her office called me the next day to do a survey on my experiences there. They are good people and the office is a good place so I gave them almost a perfect score, but when they asked me how knowledgeable my doctor was I had to give her a low score. NF is something she should know about.

[Mr. Pibb]

It has been a long time since I have had any of the major test CT, MRI or any of the other scans has been about three years since II have had a EEG and it was just an sleep deprived one hour gig with little or no results.
Robin has a great start to a list of tests and questions once compiled I will turn it into a questionnaire / test to get done. Anyone having more to add to feel free to let me know. much appreciated Jerry

[skillefer]

Actually, Buckeye had some really good and often overlooked advice. Sit and have a conversation (two sided ) with your doctor. Too often patients walk in, the doctro asks what's wrong, the person tells them, and then the doctor prescribes and walks out. Sit and actually talk to your neurologist. Mine knows that I'm on an epilepsy forum and that we discuss alternative treatments. So he's open about talking about what he knows. For instance, I know that he personally refuses to prescribe medical marijuana. (Not that I would ask for it...I don't want to lose my job. ) That's because he sees more harm then scientifically backed good. He's always telling me to quit smoking (I don't know how many smoking cessation pamphlets he's given me.... ) He talks to me about my weight, sleep habits, and always wants to know what kind of stress I've been under. My actual time with the doctor usually averages around a half hour...sometimes more. The thing is, you have to remember to engage your doctors in conversation. Also, something that you may think is totally irrelevant (herbal supplement use for example) can totally effect your medication levels. For example, certain herbal supplements boost the effects of certain anti-epileptic drug's and certain herbal supplements actually lower the effectiveness of anti-epileptic drug's.

[Bernard]

Good stuff in this thread. Kudos for starting it Jerry.

She says,"Neurofeedback? Whats that?"

[BuckeyeFan]

For example, certain herbal supplements boost the effects of certain anti-epileptic drug's and certain herbal supplements actually lower the effectiveness of anti-epileptic drug's.

A great example is grapefruit juice. It interacts with multiple medications.

[Mr. Pibb]

It is really nice to see all of these posts with questions and comments some are questions that I hadn't thought of and some have qestions that I just took for granted that would be asked I'm sure that there are more out there so feel free to ad to the list so that in the end a list can be compiled to share with all that visit CWE
Jerry

[BIGMAN131307]

Like everyone else, ask about your treatment plan. If your meds are working fine leave them be. But if they have bothersome side effects discuss them with your Neurologist. Your Neurologist could switch one anti-epileptic drug for a similar drug with less side effects, etc.

Make sure you have a listing (diary /chart) of all your seizure activity since your last appointment. The more detailed the better. If you have seizures while exercising, make sure you note that. Ask about alternative treatments you can safely add to your current treatment plan. Make sure you have all your blood work updated. Ask about any updated tests you may need: EEG, MRI, CT, etc.

Remember the Neurologist is there to help you. If you don't tell your Neurologist how you're doing, you won't be helped correctly.

[RobinN]

http://www.coping-with-epilepsy.com/...-patients-607/

This is a must read for you and your Neurologist.

[Mr. Pibb]

This was brought up by the Dr. that I visited on Tues. of this week and it is really a good point The Question was from start to finish describe a seizure as you think it happens and the feelings that are accompanied with it. Then have your significant other do the same thing you might be surprised at the difference between the two statements. Things that you have thought to be the norm can be a revelation to you as you are the last to really know what has happened.
Jerry