Re: Sister died from CMT/Nita

[Guest guest]

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

From: nitars@... <nitars@...>

< >

Date: Sunday, August 05, 2001 8:38 PM

Subject: Re: [] Sister died from CMT

>>>>>>>>>>

>>>>>>>>

>>Nita, not trying to " cause " stress. Simply trying to make aware the FACTS.

Yes its rare. But it still needs to be known. We are looking for hope, you

say, yes me too! But would rather not live as an ostrich with head in sand.

Most all posts here on this list are about CMT, and most are all Q & A and new

information etc. So one or two I have posted hardly needs more current

statistical ones to balance the ones on death!!!!!!!! And if they would list

CMT as cause and not heart failure or respiratory failure which was a result of

having CMT, then how would your statistics read??? That is what may be

frightening!

Unless you have a type that causes phrenic nerve involvement, you've not much

to worry about in that you'll die from CMT.

I have CMT type2-C, read about it. PHRENIC NERVE INVOLVEMENT, I have it, so

this subject is very real to ME. If I get pneumonia, I could very well die!

But hey don't worry about that, Don't want to scare ya, keep looking for hope,

~>Becky M.

>>>>>>>>

This is scary stuff. Although I believe being informed about CMT is important

(especially knowledge of phrenic nerve involvement and appropriate

treatment), I think it's important to keep in mind that death from CMT is

indeed rare. I'm sure that current statistics on CMT deaths aren't accurate

(per your example Lamar), but providing those might give some balance to

these recent death posts. We are looking for hope, not another stressor.

Nita

[Guest guest]

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

From: nitars@... <nitars@...>

< >

Date: Monday, August 06, 2001 12:51 AM

Subject: Fwd: [] Sister died from CMT/Nita

In a message dated 8/5/2001 9:58:47 PM Central Daylight Time, rmax@...

writes:

>

> I have CMT type2-C, read about it. PHRENIC NERVE INVOLVEMENT, I have it,

> so this subject is very real to ME. If I get pneumonia, I could very

> well die! But hey don't worry about that, Don't want to scare ya, keep

> looking for hope, ~>Becky M.

>

Becky,

This is what I referred to as sarcastic and inflammatory. I just don't see

how presenting your point like this helps anyone. It's like you are yelling

it in my face. I wanted to clarify my point, but I really would like to be

done with this now if possible. Sorry for the trouble.

Nita

Nita,

Sorry for what trouble? You mean your private e-mails to me? ? ? No

trouble, I was not trying to be sarcastic and inflammatory. I wanted those

words in caps to stand out, I was not yelling. A lot of others on list use caps

too when posting, its not yelling as you seem to think. And as for my saying,

" But hey don't worry about that, Don't want to scare ya, keep

> looking for hope, " I mean that! I don't want anyone to worry about

something that may never happen to them, but want them to be informed about all

types of CMT. And I don't want to scare anyone. And I do want everyone to keep

looking for hope. So wheres the problem?

And thanks for mailing me about reviewing medical records, and a genetic

counselor determined that your

grandfather most likely died of CMT. And that you almost died twice as a

child when you

had pneumonia, so its very real to you too, once again Nita I do not see the

problems you see, hope this has cleared up any bad feelings you had about me.

Never meant my post to be taken as you did take it, sorry, ~>Becky M.

[Guest guest]

I too, have CMT 2 and I'm 40 in a wheelchair, unable to work and yes it's scary

but we all have to die sometime - it's the only thing guaranteed in this life.

But there is the old saying 'Live every day as if it's your last and tomorrow

morning - thank God.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

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

From: Maxwell

Sent: Monday, August 06, 2001 3:56 AM

Subject: Re: [] Sister died from CMT/Nita

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

From: nitars@... <nitars@...>

< >

Date: Sunday, August 05, 2001 8:38 PM

Subject: Re: [] Sister died from CMT

>>>>>>>>>>

>>>>>>>>

>>Nita, not trying to " cause " stress. Simply trying to make aware the FACTS.

Yes its rare. But it still needs to be known. We are looking for hope, you

say, yes me too! But would rather not live as an ostrich with head in sand.

Most all posts here on this list are about CMT, and most are all Q & A and

new information etc. So one or two I have posted hardly needs more current

statistical ones to balance the ones on death!!!!!!!! And if they would list

CMT as cause and not heart failure or respiratory failure which was a result of

having CMT, then how would your statistics read??? That is what may be

frightening!

Unless you have a type that causes phrenic nerve involvement, you've not

much to worry about in that you'll die from CMT.

I have CMT type2-C, read about it. PHRENIC NERVE INVOLVEMENT, I have it,

so this subject is very real to ME. If I get pneumonia, I could very well

die! But hey don't worry about that, Don't want to scare ya, keep looking for

hope, ~>Becky M.

>>>>>>>>

This is scary stuff. Although I believe being informed about CMT is

important

(especially knowledge of phrenic nerve involvement and appropriate

treatment), I think it's important to keep in mind that death from CMT is

indeed rare. I'm sure that current statistics on CMT deaths aren't accurate

(per your example Lamar), but providing those might give some balance to

these recent death posts. We are looking for hope, not another stressor.

Nita