John has been seeing a neuropsych doc for a year for diagnostic and treatment purposes. He has even given me his cell phone number so I can reach him at any time if John is having a seizure or any unusual symptoms. My problem with him is that although he will respond quickly concerning these kinds of issues [usually same day] , he does not respond to my questions about diagnosis, prognosis etc. I e-mailed him the other day about concerns of those kinds and I have not received back any answer - 2nd time in a couple of months i have done that. Will be interesting to see what happens as I just e-mailed him about some side effects I think john is having from exelon patch. He will probably answer that right away. We drive 2 and 1/2 hours each way to Chicago once or twice a month to see this doc. for 20 min and $190 - $250. Our insurance pays 30%. How have your doctors responded to you concerning non-medication issues? Is this just the way these docs are? I am getting very frustrated and anxious with what I feel is lack of exchange of info. Thanks Chris
I think the next time you are there in his office before he even gets started tell him you have a grievance you would like to air with him. Tell him you are entitled to information that he can provide so that you can make good decisions regarding his care. Sometimes they have social workers or a similar type worker in their offices who are much better about communicating with people that they will refer you to, but people need to understand that these doctors work for us. We pay them for a service and if the service is not good we have a right to go to someone else. I hate that you have to go to the office before they will make any changes in meds even though that could be done over the phone. Then they can charge an office visit.
Do remember that prognosis is almost impossible to give.. I gather you must be dealing with EOAD if you don't have medicare. Agree with Jules - prime him ahead of time with note handed to the receptionist when you walk in, or a fax.
My husband's neuropsych doesn't really give diagnosis or prognosis either. I was told generalizations regarding prognosis. My husband has FTD and the average life span is 8 years but could be less, could be longer. I don't think any doctor can really give a prognosis as every patient is different.
Our Neuropsych said that HIPPA laws prohibit her from sending medical information over the internet due to privacy issues. I write her with questions and she will call me back for discussion. Nothing in writing, however. I think it's also a CYA issue.. In this litiguous society, something they put in writing could be used against them in court. I hate it when they treat us like we are not entitled to know what they know...and give us only a limited amount of time.
I wouldn't mind if he would e-mail back and say he didn't know the answers to my questions, but he doesn't. He just ignores them. In our case the diagnosis we've been given is memory and cognitive impairment. I guess I would like to have an idea of what he thinks the future might hold but maybe he can't. The scans say John is getting worse and that doc says FTD could be in play but the npsych doc says he thinks the deterioration is from the effects of one of his medicines. He says it's not AD but doesn't really give any reason why. Unfortunately I'm a person who likes to know what's going on a little more than I do. Maybe I just haven't come to terms with the unknowns involved. After all this time I'd like to have a more definitive diagnosis. Nancy B., what you said makes sense. Early on the doc said "I'm quite sure I can bring his memory back." thinking it was related to seizures. Maybe he doesn't want to get stuck again. That's exactly how I feel - that he isn't telling everything he knows.