New kid on the block

February 28, 2001

In a message dated 2/28/2001 5:57:01 AM Pacific Standard Time,

smcfarl@... writes:

> . I would really like to find some other kids

> that he could talk to with cmt to share experiences. Looking

> forward to hearing from you.

>

Where are you from? I have a 9 yr old boy a 8 yr old girl and a 11 yr old boy

with CMT.

February 28, 2001

Welcome .

My name is Ruth Warren and I have a 10-yr-old daughter with CMT. Her

name is Katey. She inherited it from me, and was diagnosed at age

4. I was also diagnosed as a young child.

Ruth

February 28, 2001

Hi Charlene! I've been diagnosed in the last few months as having type V

as well

and gather that it is due to a non-peripheral nerve involvement (in my case a

neurognic bladder). Does your son have some other non-distal nerve

affectation? I've searched many cmt related sites without much specific info

relating to or

mentioning a type V. Symptom wise I have a relatively mild case and am able

to

lead a pretty active life - lots of cycling etc. Take care, doug.

March 1, 2001

Hi Ruth,

Charlene here ('s better half). How is Katey coping with her CMT?

Nik is pretty non-chalent about the whole thing and doesn't see

himself as being much different than his friends. His case is pretty severe

and had a very rapid onset but he manages quite well with AFO's. He

has bone deformity in both feet as a result of CMT

and that was how we got the ball rolling with a

diagnosis. It's pretty scary if you think about what

might happen in the future with progression so we

take it day by day. I feel very blessed as when he

first saw a neurologist we were told that he might

have a brain or spinal tumour so CMT was a big

relief-we thought whatever he had might be life

threatening. Look forward to talking with you again.

Take care.

Charlene...

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

From: <warrenre@...>

< >

Sent: Wednesday, February 28, 2001 2:03 PM

Subject: [] Re: New kid on the block

> Welcome .

>

> My name is Ruth Warren and I have a 10-yr-old daughter with CMT. Her

> name is Katey. She inherited it from me, and was diagnosed at age

> 4. I was also diagnosed as a young child.

>

> Ruth

>

March 2, 2001

Charlene,

Katey is a really cool kid. Her CMT presented at about age 3 when

she started toe-walking. When the toe-walking became chronic, I took

her to a neurologist (age 4). I already knew she had CMT just by

watching her walk.

The first neurologist confirmed the diagnosis, but recommended doing

nothing (a wait and see approach). After a year of increased toe-

walking and extremely tight heelcords, I took her to an orthopedist.

Long story short, she has had 3 rounds of serial casting over the

years to stretch out tight hamstrings, and is on her 3rd pair of AFOs.

(LOL - the tendency for her to toe-walk is so strong that when she

was in casts the first time for nine weeks, she started walking on

the toe portion of the cast!)

Her arch is very high, and she rolls her foot badly to the outside

because of the muscle weakness.

Despite all this, she is a VERY active child. She dances

competitively in a dance company, and she tried out and made her

school's jump rope team the last two years. She LOVES gym class - (I

never liked it much myself). She experiences a lot of pain - pretty

much daily. She has muscle pain and burning nerve pain. She doesn't

let very much slow her down. And she understands what is happening

to her body. She asks me amazing questions about CMT that

demonstrate how much she is really compreehending. She may need

surgery some day - tendon transfers, lowering the arch and

lengthening the heel cords. We are trying to put that off as long as

we can.

The last thing I can say about Katey - she has a tremendous sense of

humor and a strong positive attitude. Last year she was the 200

Goodwill Ambassador for MDA in Eastern North Carolina.

See, ask a proud mom about her daughter and they will go on forever!

Looking forword to hearing more about your son Nik.

Ruth

> Hi Ruth,

> Charlene here ('s better half). How is Katey coping with

her CMT?

February 27, 2002

Hello,

My name is Haseenah. I'm 21 years of age about 20 no really 30 pounds over

weight, and just gave birth to a baby girl. When I. Came home from the

hospital I had really bad heartburn I thought it was my body changing after

the baby. It had only happen when I ate greasy or saucy foods so I stopped

eating those things. Then I got heartburn again and it also came with nausea

this time. I had eaten some sweet stuff and thought that was the problem so I

cut out sweet stuff to. One day it felt like I was having a heart attack so I

called my husband and we went to ER. That is where I found out that I had an

inflamed GB and gallstones. I went home the next day and my dr. called me to

set up an date with the SURGEON I told her I would call her back and never

did. I would like to keep what my Lord gave me and try to fix the damage I

have done to it. that's why I'm here and would like some help please. Right

now I'm tacking Lypo a cardiovascular and fat digestion enzyme. It has done

well by me so far I have not had an attack in about 1 mo. but I have cut fats

in my diet to an all time low. I want to know about flushes and what to do

when you have an attack. thank you again.

I'm out

Haseeah Nurdeenah

February 27, 2002

Haseenah,

My opinion is for you to build up your level of minerals, especially organic

sodium, which is found to be deficient in people with gallstones.

If you can, and have a juicer, drink lots of carot/celery/beet juice.

Not only will this build up your levels of organic sodium, but it will also

cleanse/strengthen you're liver/gallbladder.

This is discussed further in the Liver Booklet by N.D.,N.M.D.

Ariseandshine.com should have it.

Good luck,

MuslimMama2B@... wrote: