Re: RE: Susie's cousin

[Guest guest]

Below is the intire correspondence between Kay and

myself. If it is ethical, any of you that wish to

back me up on urging her to the doctors please do.

Kay and I found each other by doing genealogy

research. I had asked her a while back if there was

anyone in her family or family history that had

symptoms of CMT, I actually called it crippleness or

disabilities. She later emailed me that her brother

had just been diagnosed. I believe this was just a

year ago.

Thanks group, you are the greatest!

Ps I also had the oppurtunity to let someone else know

about CMT just yesterday when I was inquiring about a

at home transcribing job. She really seemed

interested in knowing about CMT and I gave her all the

addresses that I had.

Susie

Kay

Run like hell to the doctors.. I think you and you

daughter may have it.

Here is a fact sheet I just recieved from my CMT

support group. Join it and discuss what is going on

with your brother, you and your daughter. Here are

address I want you to go to. I know we have never met

and I sure don't correspond as often as I should but

you are " kin-folk " and I am concerned.

www.charcot-marie-tooth.org

www.cmting.org

www.mdausa.org

Scoleosis is one of the side affects of it. Straight

thumb is a symptom. Not being able to hold on to

things is also a symptom. I put all of my symptoms

off as regular, duhhhhhhhhh blonde syndrome. Well it

isn't. There were reasons for my duhhhhhness (LOL)

that wasn't apparent. Look how long it took your

brother to be diagnosed.

--- Kay Spakes <kspakes@...> wrote:

> Susie,

> It was me that emailed you about CMT. I have not

> been tested yet kind of

> afraid of it. I am not really clumsy, I do hair and

> I do have a tendancy to

> drop things or things slip out of my hands, I just

> call it hairdresser

> hands. The docs seem to think my 13 year old

> daughter has Scoleosis crooked

> spine, I seen her xrays and it is crooked. I was

> born with a straight thumd

> , it bends at the knuckle, other than that it is

> pretty straight. When i was

> pregnaent with my son,, { He will be 18 this month}

> I get arthritis in my

> right knee. Je also messed up my thyroid a little .

> My big thyroid problem

> hit me in 1993. I almost died from it.My uncle is

> still having problems and

> I know in my heart that medication Baycol damaged

> him big time. will get my

> nerve up and get us all tested. GOD Bless You , I

> pray for a miracle for all

> of us.

> ----- Original Message -----

> From: Susie Lemin <slemin46@...>

> Kay Hackler Spakes <kspakes@...>

> Sent: Wednesday, January 09, 2002 10:16 PM

> Subject: CMT

>

>

> > Kay,

> >

> > Was it you that emailed me a few months ago about

> your

> > brother having CMT? I hope I have my memory

> intact,

> > LOL.

> >

> > I just wanted to tell you, if it was your brother

> with

> > this ailment. PLEASE PLEASE see a doctor yourself.

> I

> > just turned 55 years old. I was lead to believe

> that

> > CMT was carried by the women in our family and the

> > males that received the gene would be affected to

> some

> > degree. The bottom line is that is BUNK. I have

> it

> > too, although a milder case than my father and son

> and

> > due to ankle surgery about 15 years ago it is

> > progressing only in my hands. I have a " straight "

> > thumb at the moment and the other didgets in my

> hands

> > are beginning to respond.

> >

> > It appears that all my clumsiness and my " duck

> walk "

> > were all due to CMT, just in such a mild form that

> it

> > went unnoticed until the past 2 months. My

> husband

> > committed on my beginning able to get up our step

> to

> > get in the house. I put it off as being over

> weight

> > and getting old. Well not old just bummed up.

> >

> > So dear Please have yourself and your children

> checked

> > out if possible. BUT first make sure you have

> good

> > insurance before MDA does any DNA testing.

> Insurance

> > companies really frown on giving out insurance to

> > folks that have genetic tendencies even if they

> had a

> > ailment or not.

> >

> > Well I have to go, Joe just walked in

> >

> > Love

> > Susie

> >

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