Re: doctors and other things

[Guest guest]

<< This was the sum total of his advice: LOSE SOME WEIGHT!!!. >>

That is the classic statement most docs have for most patients if they can't

cure them, IMO. It must be terribly frustrating to them when a very thin

person comes in with an uncurable situation. I suppose they are told to gain

some weight.

Since CMT isn't very treatable, and not curable, many physicians don't offer

much information. It's up to the patient to learn on his or her own. Also,

the last time I checked there wasn't much accurate info in print for the

layperson, so I don't know what people without internet access do to learn

anything about CMT. CMTInternational and the CMTAssociation do put out

newsletters that are informative, so if they link up there it would help a

lot.

Others may have different experiences. I'm just saying what I've experienced

and what I have learned from talking with hundreds of other CMTers in

chatrooms and in e-mail support groups including CMTUS.

The most profound fact is how very different we all are in so many ways,

especially in how we are affected by our CMT.

Kat in Seattle

[Guest guest]

In a message dated 7/30/2000 12:51:37 PM Pacific Daylight Time,

cmontana@... writes:

<< I wonder what ever happened to " bedside manner " with

these doctors? The neurologist who dx'd me was such a jerk,

personality-wise. He requested that I bring my mom and my daughter in

for testing, because he said it's alwys helpful to see a family. We

agreed to do that - when there, I cautioned him that my mom was quite

hard of hearing and asked him to speak louder. He replied she would

just have to listen better. He also made some off-the-wall remark to

my daughter which was highly insulting. Well, I hope he got a

research paper out of our family! We never visited with him again. I

wonder if docs could learn to just say nothing, rather than things

which hurt, insult, or are just plain unnecessary!

Well, perhaps I shouldn't get on the old soapbox today.

Regards, Carolyn

>>

This sounds like the SSI DR I had to see. He was so rude it was unreal. He

pushed me to see if I had good balance. He thought that was so funny. He told

me to walk on my heels and toes. I said I can't he said just hold onto the

wall. The only nice thing he said was that I had nice legs. The man was crazy!

jenny

[Guest guest]

Hi, . Gee, I wonder what ever happened to " bedside manner " with

these doctors? The neurologist who dx'd me was such a jerk,

personality-wise. He requested that I bring my mom and my daughter in

for testing, because he said it's alwys helpful to see a family. We

agreed to do that - when there, I cautioned him that my mom was quite

hard of hearing and asked him to speak louder. He replied she would

just have to listen better. He also made some off-the-wall remark to

my daughter which was highly insulting. Well, I hope he got a

research paper out of our family! We never visited with him again. I

wonder if docs could learn to just say nothing, rather than things

which hurt, insult, or are just plain unnecessary!

Well, perhaps I shouldn't get on the old soapbox today.

Regards, Carolyn

> This is / I am not sure how long I would have

> gone without knowing I had cmt if it wasn't for this

> general surgeon I was seeing for an entirely different

> problem. He curious about the way I walked and offered

> to have some different doctors do some tests on me

> while I was " captive " in the hospital for a week. An

> orthodpedic surgeon ran some tests and full body

> x=rays and told me that he thought maybe I had had

> infantile polio. Which I thought was strange since I

> had been given the polio shots when they first came

> out in the 1950s. A couple weeks later my doctor made

> an appointment to see a visiting nuerosurgeon from the

> U of Washington (I was living in Alaska at the time).

> This doctor diagnosed CMT in about 2 minutes. He then

> adviced going to Seattle for more tests and a second

> opinion. This I did. The doctor in Seattle, also a UW

> nurosurgeon, concurred in the cmt diagnosis than

> preceded to berate me for doubting his colleague (who

> had referred me in the first place!!) This was the sum

> total of his advice: LOSE SOME WEIGHT!!!. He did not

> answer any questions and would not adequately explain

> what cmt meant or what the long term health problems

> would be except for some comment about it would get

> worse with age. Almost my entire knowledge comes from

> the library and the internet. I haven't seen a doctor

> in 17 years.

[Guest guest]

Carolyn I thought I was the only one who had met an unfeeling doctor. when

I went for a confirmation of the diagnosis at a leading Univ. hosp.interns

were called in to see the funny feet, droopy eyes and strange walk Then he

left while one intern played with the machines shocking me painfully.He came

back and told him to stop saying " Youre torturing her " .After I wrote him a

letter he did apologise so maybe he learned.We just have to keep trying.My

family doc is a peach and is so supportive..---keep on-- Gwen

[Guest guest]

Hey, ...

Why didn't you just pull out a Black Jack and bop that wierdo ... ???

[Guest guest]

Hey, ...

Why didn't you just pull out a Black Jack and bop that wierdo ... ???

[Guest guest]

In a message dated 7/30/2000 10:47:18 PM Pacific Daylight Time,

oregonpapa@... writes:

<< Hey, ...

Why didn't you just pull out a Black Jack and bop that wierdo ... ???

>>

I am sorta used to wierdo Drs.

jenny