Parkinsons Disease:

Questions to ask your doctor
Being diagnosed with a serious illness like Parkinson's often comes as a shock. You may find it hard to think of everything you want to ask your doctor.
It might help to make a list of questions before your appointment. You could also take notes during your visit, or bring a close friend or relative with you to ask questions and jot down information.

Here are some questions you may want to ask.


Have I got Parkinson's disease for sure? Or could my symptoms be caused by something else?

I'd like to see a specialist. Can you recommend a doctor who specializes in Parkinson's disease?

Will my symptoms get worse?

What drugs can I take to ease my symptoms?

What drug can I take to delay starting levodopa (also called L-dopa)?

Do the drugs have side effects?

When should I start taking levodopa?

http://www.consumerreports.org/healt.../questions.htm

I'm seeing a MDS that specializes in young onset PD, and other doctors have given me the same answer to all but the first question, they always say "all PD patients are different" Extremely frustrating, I could have told myself that. H*ll, the diagnosis based on the response to l-dopa is not even all that accurate. (I'm looking for 100% )

And In regards to "could it be something other than PD", I had to twist the arm of all three neuros that diagnosed me to test for anything else. (and I had to suggest the tests) WTF. When I mentioned Wilson's disease, he just said "oh yeah, ok"

I like my doctor, I've read about his experience, he is well veted in the structures of western medicine. I just think they are hobbled by a system, starting with their education, that locks many of them into to being glorified prescription machines.

CTenaLouise these are great questions, especially the first one, which I ask every time I go to the MDS, "could my symptoms be something other than Parkinson's syndrome, um disease?"

If you've read this far, thanks for listening to my vent. I know I'm mostly preaching to the chior.

Robert

This is a good idea. I would add....

What changes should I make to my lifestyle? for example diet and exercise.

Bryn

This book,written by a doctor, western-trained at that, goes into detail about how doctors think and why they do it. Basically, they are trained from the get-go to think in a linear fashion, asking questions which if answered "yes" point them to another set of questions, and which if answered "no" point them to another set of questions...both of which end up with a single "disease" for which a surgery or Rx can be given. YOU have to get your doc to think outside of this linear box, and at the end of the book, there are some questions you can ask to help your doc do this...assuming, of course, he/she is amenable. Some docs really resent anyone remotely questioning their reasoning. I can't remember all the questions but here are the ones I remember:

could my symptoms be caused by anything else?
what other diseases/conditions share some or all of these symptoms?
is there an alternative treatment/surgery we could discuss? (including doing NOTHING-sometimes the treatments are worse as we all know...)

I cannot remember the name of the author as I got this book at our library some time ago.

Along this line, I couldn't help but notice that at our last appt. with one of the neuros we see, he pulled out this big notebook left by one of his pharma reps for the new drug he wanted us to try (we never did try it...) At any rate, lo and behold, in that notebook was the SAME type of yes/no line of questioning with the arrows pointing one way or another depending on the answer, all of which arrived at the course of action involving an Rx. Makes one wonder who really designs the curriculum at the medical schools...