Seeking a new MDS...what would you ask?
 

Hi all,

Let's say I've been completely underwhelmed by my neurologist as of late. I have an appointment with a potential new MDS later this week, and I admit that I am a bit nervous. I feel that I've researched so much on PD, yet I don't feel that I know how to harness what I've gleaned and apply it to interviewing a doctor. I don't want to come across as a problem patient, but I want it clear that I am progressive in my views on our treatment and assertive in seeing that the patient play a key role, or a partner role, in treatment. I guess I'm seeking a balance between a neuro who will allow me a prominent role with keeping my overactive imagination and research trigger finger in check- someone who will ground me in reality a bit. I need to temper that idealism!

I'm trying to come up with some questions to ask at my initial appointment. One that comes to mind is:

- Treatment with off-label drugs? Is this taboo to even ask?

- Use of herbal supplements like mucuna?

Any other key questions I should have in hand? If you were to start all over again with a new doctor, what would your top one or two questions be?

Thanks!

Laura

Laura,
1. I feel that the relationship between the doctor-patient has to be comfortable for you as a person who will benefit in this interaction, be it teacher-student like, equal partners or whatever way you feel appropriate when you meet your neurologist.

2. In my book, there are no dumb questions, every question you ask will help you and him/her. If I am not sure of what I am asking, I usually say that.....eg., Dr. so and so, I want to try calcium blockers because there was some discussion on Neurotalk, what is your suggestion?

3. I also control my medications: how much, how many times etc., and I tell my doc exactly what i am doing or intending to do

4. I am very open about my alternative therapies, doc might not believe it or OK it, but if you benefit from it, he/she will notice it a year from now.

5. I get a 15min appointment wiht my neuro every 3 months and i maintain a record of my meeting and tell her about the progress or lack there of in response to her "how are you doing?"

Oops, I just read your post again, sorry for the unwanted advice!
Here are the specific questions I would ask:

Is it OK with him or her if I want to be on minimal meds, try alternative treatments and adjust my medications as I need, of course I will consult him/her regarding that
I read a lot about PD and so I will always have questions and hope he or she does mind that!

Good Luck!
girija

references
 

Do you have any friends that go to your MDS? See what they have to say about him/her?
Isthe MDS part of a teaching hospital? University?
Is doctor in private practice or part of a center of excellence?
Does he have a good support staff.
is he easy to contact? (Either by phone or email)

Chas

I would ask what he or she thinks about the controversy about the way the Parkinson's volunteers were treated by Amgen in the GDNF clinical trials. The correct answer: there is no controversy. It was WRONG.
I ask the same question of any medical personnel treating any member of my family, even if it has nothing to do with Parkinson's. If anyone treating patients thinks that what was done to the PD volunteers was normal, routine procedure and it was all proper and ethical, that medical professional is in the wrong line of work and I will tell them so. I don't want someone who is as ethically challenged as that in a position to harm my family the way the 48 volunteers and their families were harmed.
If they do not know what I am talking about, I provide them with the abundant information that is available on this site, on my site, and other sites, plus my own description of what happened; I offer them a copy of Nick Nelson's book (Monkeys in the Middle) and I give the medical professional time to form a "second opinion". If they hold to their first opinion - that Amgen did the right thing,- I just shake my head and walk away. I really do not want someone with such extreme moral emptiness to be treating my wife and children, or anyone close to me.

Be underwhelmed by your Neuro,its a partnership and you are unique.This illness is a neuros nightmare,no two patients the same,everyone needs tailored plann ed care and medical management.Keep a diary ,take it wth you,help him to help you.If your not happy make it known.Take some one with you appointments are stressfull another ear is usefull

Among other things, I would especially want to determine the prospective MDS's opinion of diagnosing and treating PD symptoms vs. the symptoms caused by the various forms of parkinsonism, and the reason is simple... if the symptoms are being caused by something in the environment (as in some forms of parkinsonism), it would be preferable to ascertain what is occurring and to define it carefully, and to *not* assume the source(s) of the symptoms to be idiopathic by default.

That, and there's no reason to assume that "it" can only happen once. Having a diagnosis hasn't made me bullet-proof yet!