Q: I am 28 years old. I have complex partial seizures, and I have been having them since I was 2 years old. I was diagnosed at the age of 20 years because previous doctors had told my mother that I was "acting out". I have had 4 EEG's, ( 2 sleep deprived, a 24 hour continuous, and a 5 day video monitored). I was not told what was normal, what was abnormal, or what my tests showed. I have had to change doctors because I had to stop working in August 1997, had no medical coverage, and was turned down for disability/SSI. I now have a doctor who will treat me without these things. I have to travel 3 hours to see him, (and have someone drive me, which is hard to find), and I feel that I am not getting treated as well as I could. I feel this way not because of some lack of care or concern on his part, but because of a lack of knowledge and assertiveness on my part. I don't know what questions to raise, what information is important, how to express my concerns, etc. I have been telling people about these seizures for over 25 years and yet, I still find myself befuddled, tongue-twisted, and at a lack for the appropriate words to describe what I am experiencing on a daily basis so that anyone will understand. I have spoken with others who experience seizures and even with my lack of words they seem to understand. So much of what I experience seems to be too far out of the range of everyday life for others, even doctors, to grasp the terror felt, the confusion and disorientation felt, the shame and trying to cover up. How do I impart these things to my doctor in a rational, logical way? What are the questions I should ask? Thank you for any help you can offer.
A: There isn't a set list of questions to ask your doctor. Basically, you should ask about any issue that you feel uncomfortable with or don't understand. This may include things like your diagnosis or results of your tests. It is reasonable to ask about long-term plans for your therapy, if you are having problems with seizure control and/or side effects from your medications. Whenever a new medication is started, you should ask about what side effects to expect, and those that might occur. You should also ask if there are any medications that you should avoid, or call before taking. You should also ask how to contact your physician in case of emergencies.
Perhaps some of the most important questions to ask are what information you should provide your doctor at each visit and what you can do to help your doctor help you best.