questions to ask new doctor

[Guest guest]

I am going to a new doctor on Monday for an evaluation and to see

what is available for me to try out.

Looking for suggestions of questions I should be asking my doctor to

make the most out of this appointment. What kinds of questions have

you all asked when seeing a new doctor? I know this sounds very

generic and general, but any help would be appreciated!

Jackie

[Guest guest]

Jackie,

You didn't specify what kind of doctor you are seeing for " an evaluation " . And

for what the evaluation is for. I ask different questions for different doctors

or if surgery is in the picture, etc. Do you know you can look up a doctor's

training and office practice methods by going to AMA's Doctor Finder?

If it isn't too much trouble, let me know what KIND of doctor - I've been to

them all; perhaps then I can give you ideas for questions. If you wish to keep

it private, I understand.

Gretchen

[Guest guest]

Gretchen,

He is a MD listed as Assistant Professor of Neurology at the University of MD

Neurology Ambulatory Center. He went to med school at s Hopkins and did

residency program there and at University of land. I have been going to

s Hopkins Department of Neurology for the last 20 years and was referred to

this doctor because he really helped out someone i know who was having a sudden

neurological condition that he helped diagnose and treat.

I have been told in the past that i was not a candidate for surgery (from

another doctor that CMT had suggested seeing) as they say i have bilateral

weakness on both feet, so a tendon transfer was out of the question.

My reason for the appointment is to get another view point from a doctor who

cares about his patient. I do know that he has patients that do have CMT and

seems to be knowledgable. My experience at s HOpkins has been that although

they are bright doctors, they tend to see their patients as research objects

rather than real people and it feels like such a factory there. Because they

treat so many children with Muscular Dystrophy, I feel like they didn't really

think my condition was extreme.

My foot drop is very severe, my quads are almost completely gone in addition to

my calf muscles. I tend to walk now by raising my hips. I wear the ToeOff

braces, but walking is starting to become increasingly more difficult. Want to

slow the process and find out whatever I can that i can/should be doing or any

new surgery/treatment options. Fortunately, I do not experience pain, only

extreme weakness and fatigue.

Thanks for any guidance you can give me.

Jackie

[Guest guest]

Jackie,

Thanks for the background info and all. So you are hoping the new

doctor cares about his patients and see what he has to say. Yes,

anytime one goes to a University Center, patients become research

objects - which is why I left UCLA years ago. Basically sounds like

you just want new input.

So, you might want to ask:

1) should I be wearing a different type of brace? (which kind/can you

recommend and can you give the name of an orthotist YOU would go to?)

2) what can be done to slow the disease progression? (here's where

you can ask about surgery, medications, vitamin therapy/vitamin c)

(ask " if YOU had CMT, what would YOU do " ?)

3) can you help me with my fatigue - either medications or different

braces? do you think I should use a scooter part-time?

4) what can be done about my weakness? Would physical therapy be

beneficial?

5) do you recommend any types of surgeries at this point that might

help my feet and legs and keep me walking longer?

Jackie, take copies of all your tests that you can take with you - I

mean, even like written reports - it might speed up the answers and

instead of the new doc saying " well, I need to do another EMG/NCV on

you " - then he'd have the results already. The more info you can give

the new guy the less he will have to suggest in the way of tests,

etc. He will most likely do the manual neuro exam and ask about the

family again.

Maybe a useful tool for you to take would be some kind of graph that

shows your progression, say in the last ten years...one side would

have the years, 1994, 1995, up to 2004, the other side would show a

list of your symptoms, fatigue, difficulty walking, etc. Then draw

lines (maybe if their have been " key " events in your life or periods

of extreme stress, you could add those in simply by using checks or

pluses, or colors or whatever, to show when your symptoms changed.

Kind of hard to explain that in words. It would be easier if you were

here and I could show you. At any rate, maybe some of the above will

help and perhaps it will help you think of other questions. I hope

he's a nice guy. If I can help anymore, let me know.

Gretchen

[Guest guest]

Gretchen,

Great advice. Wish I had asked this earlier so I have more time to prepare.

Fortunately, I do have reports from s Hopkins that show quantitative

measurements and also reports from 6 months ago from Dept of Rehab. Have not had

an EMG in over 10 years, so I guess if necessay, I would agree to that again.

I am going to ask his advice on the metal braces and vitamin therapy.

Will post on Tuesday and let you guys know what I find out, if anything new!

Jackie

[Guest guest]

Jackie,

I'm not really sure what to tell you to ask the doctors but I just wanted to

wish you luck. I also know what you mean about Hopkins docs, I felt that same

way when my mom had her transplant there. Again,good luck at you doctor

appt,I hope they offer you some new options. Please keep us posted.

Pam O