Re: Healthcare satisfaction

September 23, 2003

I am extremely happy with my GP. I've been with him for 3

years now and he's extremely cooperative with me. Recently

I saw him for prescriptions to help with my symptoms of CMT.

I know a neurologist is technically better suited for this

- but I have not been able to find a neurologist who

(1) truly knows CMT the way they claim and (2) treats me with

respect. I've found that the basic knowledge my GP has of

CMT is the most knowledge I've found of any doctor. He also

(without question) gave me samples of neurotin, welbutrin

and ultracet, and when I called his office a few days ago for

prescriptions to be called in on all of these he called in

the prescriptions written exactly the way I asked (in other

words - I told him what dosage I wanted and how often and he

did not question my judgment).

My pain management doctor/back doctor is less knowledgeable,

but equally courteous to me. I also printed out a folder

full of information on CMT (since he had never heard of it

before) and he actually told me that he was reading through

it at our last appointment. I found that to be very

encouraging to me.

When looking/keeping a doctor I personally find that the way

they treat me is the most important. I really need to have

a kind/courteous doctor that treats me with respect. I'm

sure knowledge and skill should be first (and when it comes

to surgery and such it is) but for " regular " doctors I'd

much rather see a kind one with less knowledge then a

knowledgeable one who treats me like dirt.

September 24, 2003

--- I am not very satisfied with the technical and interpersonal

aspects of my healthcare. Maybe because I was subjected to so many

tests (many of them extremely painful/tortuous)? My doctors

(including my neurologist) don't seem to know much about this disease

and my prognosis for the future and/or how to be of help. It is

frustrating! And now that I've been turned down for disability, I

feel like I don't have anywhere to turn to someone who

understands/sympathizes (except, of course, fellow-CMTers). Colleen

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