Self Confidence or Sticking my foot in my mouth

[Guest guest]

Hey there group,

I just went to the Discovery Health web site. Guess

what? No mention of CMT or any of its alias', there

was a short article on peripheral nerve diseases but

not one word on our condition/disease/disorder. I

used disorder because diseases are easily contagious,

our disorder isn't, only hereditary.

Yes I wrote them a nice long letter, and had to do it

through " Ask A Doc " and then picked the only subject

that seemed to fit " Fitness " . I didn't give them all

the information that I have gathered, let them earn

their big bucks and do a little research. I did tell

them that it is growing faster and faster and at the

present is at the ratio of 1 in 2500, and ask them to

compare those odds with what they did have listed.

I don't expect to receive an answer, my mouth

sometimes over loads my brain and I don't get

answered. But if I do get one I will share with you

all. They did tell me in the little " quip' they have

after your send your message that it could take up to

two weeks and not all questions get posted. So what!

They may look it up and decided to add it to their

list of " Diseases and Conditions " . Heres hoping,

Love to all,

Susie

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[Guest guest]

Hey Susie,

It's ironic that you were sending a letter that talks about

CMT occuring 1 in every 2500. I was at the doctor's (a new phy.med/rehab

doctor)

and he was talking about oh this and that and when you have a disease

like CMT that is very rare and only 1 in (he said something either like

50,000 or 500,000) and I was thinking- I THOUGHT IT WAS MORE COMMON THAT

THAT....

yeah....so anyways-shows doctors don't always know what they are talking

about....ANOTHER EXAMPLE OF THAT FACT...

I did tell

> them that it is growing faster and faster and at the

> present is at the ratio of 1 in 2500, and ask them to

> compare those odds with what they did have listed.

>

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[Guest guest]

From what I have learned in the past 2 months on the

net and here it is one of the most common genticly

transmitted (is that the right word?) diseases, like

hemophilia and color blindness, although these two are

bad examples as they are X-chromosome related as

opposed to autosome like CMT. BUT not one of the best

known as it is often misdiagnosed as something else.

I met a lady at my Blood Pressure Clinic and she

showed all the signs I asked if her parents and

grandparents were the same as she was. She answered

yes , her diagnosis at age 84 is sever arteritis. I

told her about CMT and ask her to talk to her doctor

about medications that would help relieve the pain in

her hands. She can barely stand for me to lift her

arm to put the B/P cuff on her, her hands are numb

most of the time and clawed. So you see if everyone

talked to everyone they knew about CMT, and like Sue

make the newspapers write about it, It may help.

--- butterflypower@... wrote:

> Hey Susie,

> It's ironic that you were sending a letter that

> talks about

> CMT occurring 1 in every 2500. I was at the doctor's

> (a new phy.med/rehab

> doctor)

> and he was talking about oh this and that and when

> you have a disease

> like CMT that is very rare and only 1 in (he said

> something either like

> 50,000 or 500,000) and I was thinking- I THOUGHT IT

> WAS MORE COMMON THAT

> THAT....

> yeah....so anyways-shows doctors don't always know

> what they are talking

> about....ANOTHER EXAMPLE OF THAT FACT...

>

>

>

> I did tell

> > them that it is growing faster and faster and at

> the

> > present is at the ratio of 1 in 2500, and ask them

> to

> > compare those odds with what they did have listed.

>

> >

>

>

>

________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for

> less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

>

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