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Hi Lamar,

Thanks for the in-depth reply..

If I understand you correctly, you are saying that the percentage of people that

have CMT is about the same or slightly higher.. but the number of people that

have it are up so much higher due to the fact that there is a larger number of

people here now than there was say 50 years ago...

That makes 'cents'...hehehe

I agree with you in that we need to get CMT much better known.. Around here,

you mention CMT even to most doctors and they give you a funny look.. you

explain what it basically is and they change the subject or say something like "

that's for your neuro doc. to deal with... not me " ..

Twice now I have said, " NO.. it's for ME to deal with... by finding another

doctor " (boy does that bring that " funny look " back in a hurry). " One who is

better informed or at least willing to learn what CMT is all about so he can

provide proper care " ... It does get the point across.

The way I look at it, doctors, lawyers etc. are your employees. You hire them

out of your pocket or through your insurance company to provide proper care and

advice to you about your particular problem. If they do not know about or are

unwilling to learn about your problem... then fire them. You would not keep an

employee around that isn't doing his job now would you?? Find a doctor that is

more informed about CMT. Your body will thank you for it as time goes on.

BOY--That had to be at least .10 worth.. :~)

Thanks again for your info Lamar.. Ernie NY

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-----Original Message-----

From: M & E Z <EZduzit@...>

< >

Date: Saturday, August 18, 2001 6:09 PM

Subject: [] Lamar

..

BOY--That had to be at least .10 worth.. :~)

Ernie NY

>

>>>Oh Hey Ernie, I'd pay at least a shiney new quarter for that! LOL, ~>Becky

M.

Hi Lamar,

Thanks for the in-depth reply..

If I understand you correctly, you are saying that the percentage of people

that have CMT is about the same or slightly higher.. but the number of people

that have it are up so much higher due to the fact that there is a larger number

of people here now than there was say 50 years ago...

That makes 'cents'...hehehe

I agree with you in that we need to get CMT much better known.. Around here,

you mention CMT even to most doctors and they give you a funny look.. you

explain what it basically is and they change the subject or say something like "

that's for your neuro doc. to deal with... not me " ..

Twice now I have said, " NO.. it's for ME to deal with... by finding another

doctor " (boy does that bring that " funny look " back in a hurry). " One who is

better informed or at least willing to learn what CMT is all about so he can

provide proper care " ... It does get the point across.

The way I look at it, doctors, lawyers etc. are your employees. You hire them

out of your pocket or through your insurance company to provide proper care and

advice to you about your particular problem. If they do not know about or are

unwilling to learn about your problem... then fire them. You would not keep an

employee around that isn't doing his job now would you?? Find a doctor that is

more informed about CMT. Your body will thank you for it as time goes on.

BOY--That had to be at least .10 worth.. :~)

Thanks again for your info Lamar.. Ernie NY

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  • 7 months later...
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Everyone,

I think Lamar makes a good point that neurologists do not consider their

patients overall quality of life.

I like to share with you what I have experienced with one of the neurologists

I had encountered, needless to say she is not my current neurologist.

As you all know, has nocturnal seizures only. She was initially tried

on Tegretal but then switched to Topamax. Even with this drug she still

continued to have seizures, I stayed up most every night with her, which left

me mentally and physically exhausted. And needless to say the Topamax doped

up so much that her days were lived in a sedative state.

We returned to the neurologist, agivated I told her that this medicine is not

working. First of all she was still having seizures and second she was not

able to function in school.

You know what this woman had the nerve to tell me, " There was nothing wrong

with , she is not the one who is complaining, YOU are " .

Of course I was the one complaining, I lacked sleep, my child is having

7-8seizures a night and she cannot concentrate in the morning.

Who would not complain? So Lamar you are absolutely right, they don't care

about our quality of life. All they care about is their paycheck.

Tracey

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