Welcome

[Guest guest]

Hi all,

Thanks and Sue for the words of welcome.

I am learning a lot from the list and it will help

me to ask the right questions when I go to see the

doctor for my second visit.

Does any one have any hints on diet or threapy? (Most

of my pain is in my hands)

Til next time...

Rose

__________________________________________________

[Guest guest]

Hi !

How interesting....my name is Tania and I'm 28 as well!!

Welcome to the group....you will be sure to find lots of support and warm

loving hearts here.

Take care.

Tania :~)

[Guest guest]

Hello Tania

Yes, gave me a surprise, some people call me Tania too. Thanks for that.

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

From: Tania Bradley <tbradley@...>

< egroups>

Sent: Saturday, October 07, 2000 4:33 PM

Subject: [ ] Re: Welcome

> Hi !

>

> How interesting....my name is Tania and I'm 28 as well!!

>

> Welcome to the group....you will be sure to find lots of support and warm

> loving hearts here.

>

> Take care.

>

> Tania :~)

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

i run a low grade fever almost every day. kathy

[Guest guest]

P.

It is good to hear from you again. I am sorry you are having the fever

problem but talk to your doctor, maybe he can think up something. Can you

take Tylenol for the fever? Sometimes I run low grade fevers which my

doctor believes are from the RA. We do lots of weird things to challenge

our doctors.

I have been thinking of you with all the wind chill temps we are having and

you are even further north than I am. It is suppose to get into the 20's

this week - a real heat wave but still not enough to melt any of the snow

that has piled up this winter.

Let us know that the doctor says about your fevers. Stay in, if you can,

and stay warm.

Pat

[Guest guest]

Dear moria,

tks a lot for your respond, I relly do want to get rid

of the mercury and other toxic from my son's body and

brain, but unfortuntely we are really far far away

from your country and we have not any experience

doctor to do this and if bring one of the good doctor

from your country we have to pay such a lot of money

and for he time being we really do not have the fund

to finance this kind of thing.What we are doing is

make him 100% GLUTEN AND CASEIN FREE, FEE OF WHAT HE

IS ALLERGIC WITH, FREE OF BAD FAT and also free of

fish (because all fish here are contaminated) and try

our best to give him as best education available here

a possible to make him free of stress. but what we

cannot avoid inviromental polution, that is the

biggest problem we are facing. frankly speaking, my

son never hve any MMR vaccination because at the time

his MMR vaccination was due, he got chicken pox. And

his first hair analizing in 1998 (when he is 6 years

old, there is not any indication of mercury in the

result and at that time because we do not know that

fish is really contaminated with mercury, we gave him

a lot of it and (6 months later) the second one shown

a little bit but at this time his behaviour changed

and his ability to study in school also not good and

one year later the third one indicated very high and 5

months later with supplementation and all the diet,

the mercury come down drastically and his behaviour

become much much better but then come another problem

such as Lp (a) {lipo protein a)

for someone who has high Lp(a) have high risk of

stroke and CVD (cardio vascular desease) and they said

if Lp (a) very high, blood circulation to the brain

will not be good (blood cannot go thru the finest

nerve in the brain ) and I have to do brain activity

test but they said that they quality of the plasma can

be tested only at the latest 30 hours from the time it

was taken, so how can my son blood can reach Lab in

USA before 30hours since the time of travelling from

Jakarta to LA takes at least 24 hours ? confusion

isn't it

Well moria I am really very sorry to pour out my

confusion and sadness in you but I really got panick.

I will try to bring him back to the lab to recheck but

this week the reagent to test Lp(a) ran out, can you

believe it ?

Tks for your sympathy.

ellen

> I don't know if I can be of much help. I don't know

> what

> " very high Lp " is. So, I cannot help with that.

>

> It sounds like you are doing a lot of very good

> things with

> your son. However, you said that he has high

> mercury. This

> list is for people who want to learn about the

> problems that

> come from having toxic metals, such as mercury, and

> what

> can be done to correct this. If your son has high

> mercury

> then it would help him very much to correct this.

>

> best regards,

> Moria

>

> RESPONDING TO:

> Message: 7

> Date: Sat, 24 Feb 2001 07:55:58 -0800 (PST)

> From: Ellen Hartati <elhartati@...>

> Subject: Re: Re: very high Lp (a)

>

>

> Dear friend,

>

> My name is Ellen, I am in Jakarta, Indonesia so far

> far away from USA. I have a son who is diagnose as

> Autistic when he was 3 and half years and as soon as

> I

> know it I went to Option to learn what to do with my

> son and fortunately I make a very good progress and

> now he is in 3rd grade but he is still have problem

> with his health.Such as he is leaky gut {checked by

> great smokies lab, still have mercury and very high

> Mn

> and very low copper and aliitle bit of Pb- this

> tested

> by trace elements Inc since 1998 have been

> repeatedly

> checked (4 times)have candida albican, his good

> bacteria is zero, having bad a stigmatism}

> And ecause of all these problems, we load him with

> mineral and vitamin recommended by trace elements an

> because recently his hair analizing become much

> better, we only give him 1 adreno nsf, 1 (2mg)copper

> plus from trace elements and 2 probiogold,1/2 tea

> spoon liquid zinc,2x 1/2 tea spoon colostrum, 2x2

> beta

> glucan from kirkman and 1 flaxseed oil and 1 dha

> from

> whole food store, nystatin capsul

> (3x500.000iu)having

> all these supplementation make him really calm and

> his

> eye contact and the way he conducts conversation

> with

> his friends and people around him is become much

> much

> better. Only ecause of his eye condition, when he

> has

> to take note from white board, his shadow have to

> sit

> beside him and read it for him otherwise he will

> cried

> and said that his head is killing him (headace) And

> two days ago I checked his Lp (a) and the result

> come

> out very high

> normal range for people is < 20 and his is 132,2.

>

> Is there any body knows about this and how to make

> it

> down ? do you think the supplement I am giving him

> now

> are too much for him and make him having this

> problem

> ?

>

> Anybody response will be greatly appreciated.

>

> TKS AND RGDS,

>

> ELLEN HARTATI SOLAIMAN

>

>

>

>

__________________________________________________

[Guest guest]

welcome all and lisa i have a 17 year old boy wanna be

man to good luck....lol....from annie

--- <lisarich.com@...>

wrote:

> Welcome to all new members! You've joined a great

> group of people who are more than willing to help in

> anyway we can....regarding CMT. Now, if I could

> just get some advise on raising a 17 year old

> boy/wanna be man! HaHa!

>

> Again, welcome.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hello,

I have had knee difficulties all my life. I have had to learn my limitations.

Just most recently I thought I was Miss Sports of America (hahah) and decided

to kick a ball and this in turn put me on the couch for 6 months and still it

is not like it was. It will not be the same I don't believe. We just have to

all learn our limitations or learn the hard way I suppose. I have injuried my

knees many times. I am not going to have surgery because this could make it

worse. You know because with CMT nerves die anyway and then if a doc opens it

up there is the risk of having more nerves die. So I guess I will just leave

it alone.

Thanks,

Heidi

Gretchen Glick wrote:

> Welcome and thanks for your introduction.

>

> I had some knee problems disolating in my 20's; but PT, swimming and my

> will (lol) kept me out of surgery. The last knee that went out the ER

> doc said he thought my knees were quite possibly never put in place

> right to begin with (meaning when I was born I guess)... so I thought

> that was interesting and then blew it off. No knee problems since! It's

> been way over 20 years! That is my limited experience.

>

> Again, welcome. Hope you'll post often!

> ~ Gretchen

>

>

> Foundation: http://www..org

>

>

[Guest guest]

Hi ,

This is Judy Garland Piersol a New Member. Thank you for the welcome. I

have had 6 surgeries on my feet - all orthopaedic. I was lucky, they did

a very good job and this was 16-18 years ago when I was an undergrad in

college. Unfortunately, one of my biggest problem I've always been

dealing with is my mother's guilt(she's now age 62). She was grossly

misdiagnosised when she was very young as having Polio. The only case of

progressive Poloi in the history of the world! And the really

'butchered' her legs, due to lack of information. All she ever wanted

was kids and she got her dream -Me and my brother. She wasn't diagnosed

until I was eleven. They thought I just had foot deformities and was

clumbsy. When my mom found out that she past this on to her two only

children, she was and still is devastated. My brother is extremely

fortunate to have a very mild case, with the exception of severe

scoliosis. If anyone knows how to comfort a mother, who is riddled with

guilt, even though she didn't know, I'll take the advice. I've tried

everything - explaining that the alternative is that we would be alive

had she known and chose to not have kids. I guess that she sees me

struggling, trying to reach my dreams of being a successful filmmaker,

while I'm in a wheelchair. But she is the one who gave me the courage to

follow my dreams. If you are a parent who has passed on any of the

peripheral neuropathies - DON'T EVER FEEL GUILTY - you're child will

adjust. Encourage them to reach for the stars.

Thanks again for the welcome!

Peace to All,

Judy g.

wrote:

> Hello,

>

> I apologize for the delay, but I would like to extend a nice warm

> welcome to all of the new members. I have enjoyed reading each of

> your introductions. is a wonderful group of people! I hope

> each of you gain the answers to the questions you have and/or share

> your personal experiences with CMT.

>

> As for me, a year ago this past November 7th I had my first surgery

> (soft tissue) on my left foot. This year has flown by, but I am so

> thankful because through the advise of a friend I " found " this group.

>

> Again, welcome!

>

>

>

>

>

>

[Guest guest]

Hello

thanks very much.

jim

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

From: stacy marlatt

Sent: Wednesday, January 09, 2002 8:20 PM

Subject: [] welcome

just want to welcome you to the group jim!

stacy

TTFN- Ta Ta For NOW!!!!Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Hi !

The bone graft was not as bad as I expected - although I developed Sciatica

while recovering and that about drove me through the roof!

I had a great surgeon - he covered the hole in my hip (where he removed the

bone) with donor bone - apparently the pain many people experience after

this kind of surgery is the muscle getting trapped in the hole during

recovery. My dr didn't fill the hole he just covered it and it helped. I

know what you mean about weather changes. I am now a weather barometer in

that hip and my feet - when the pressure changes I definitely feel achey.

Has anyone else on the list had a triple arthrodesis? I had this procedure

17 years ago so, while I have very little muscle left in my feet and ankles,

I physically can't role out because the bones are fused. I still have enough

ability to lift my toes that I don't trip very often though I do have to pay

attention around rugs and any small rises on the floor. I've been having

terrible pain in my left ankle from my heels rolling in. I'm trying to lost

weight and I wear orthodics but it's really starting to get to me. Has

anyone else experienced this? From what I've read they don't seem to do the

triple fusion as much with CMT - I was 13 when I had it done. I'm curious

about long term results after this procedure.

I'm enjoying reading the posts - and I just ordered the book - I'm very

excited about that. Thanks everyone for sharing!

leslie

>From: " " <lisarich.com@...>

>Reply-

>< >

>Subject: [] Welcome

>Date: Tue, 22 Jan 2002 23:02:46 -0800

>

>Hello ,

>

>Welcome to !! Happy belated birthday too!! After reading your

>introduction, I came to the conclusion you have had your fair share of

>surgery. I am 42 and within the last year and a half, I've had both of my

>feet operated on. The surgeon performed what is called soft tissue

>surgery....cutting the Achilles tendons, lowering my arches and breaking

>the bone to my big toe and pulling the front of my foot up and placing a

>screw in it to hold it in place. I've been pleased with the outcome.

>

>I'm glad you are recovery well from your recent surgery. I've always heard

>removing bone for a graft is quite painful; is that true? Yes, I suppose

>as we get older (age 31/42.....not a chance) we may have more aches and

>pains, but we have to keep going. I have noticed the weather seems to play

>a part in some of my aches and pains. I also have scoliosis, so I usually

>go to the chiropractor at least once a month to be readjusted back into

>shape! I really sleep well after an adjustment.

>

>Thanks for sharing about yourself and we look forward to your participation

>with the group. Again, welcome.

>

>

>Texas

>

>

>

[Guest guest]

In a message dated 2/2/02 11:43:17 PM Central Standard Time,

Auntblabbie2000@... writes:

<<

**Remember that we serve Whine and Cheese everyday, with no limit on

Whine**. >>

i have colby. muenster, cheddar and mozzerella!!! ritz crackers too!!!

kathy in il

[Guest guest]

Thank you for your welcome, Gretchen. I posted the original email about a

week ago, and I'm just now getting it in my mailbox. Weird.

Anyway, I've passed on his site to my mother-in-law as well. My husband was

adopted so there was no way to trace his family history, therefore, she and I

have always been thirsty for any information we can get on CMT.

[Guest guest]

Hi

Pleased to met you....I also am from Australia and

have CMT Type 2...My 12 year old son has it also...

Where about's in Australia are you from? I am in

Newcastle, New South Wales.

Lee-anne

has HOPES!

(Honest, Original, Positive, 'Experiential', Sharing)

By 'experiential' we mean we share from our CMT experiences

AND learn from others experience. We believe " Together

(We) Can Manage This - CMT! " And that's done right here at

!

Awareness Nibbles:

Approximately 70% of CMT is Type 1A.

Approximately 15% of CMT is Type X.

Did you know current world population

estimates suggests 2 out of every 10

children have CMT?

[Guest guest]

,

Thank you for your sharing, our lives work from inside out

and those of us with CMT will go on.

Mike

[Guest guest]

Thank you Gretchen for your kind offer to help with my posts, I

sent an introduction of myself but I'm not sure where that has

gone, could you please suggest what I have done wrong.

Hi , I haven't seen your introduction come through yet, so

I don't know what to say except if you still have it, try to

re-send it to the group email ~ Gretchen

[Guest guest]

Thank you Gretchen, I have sent another we will see what happens,

I suppose the more I practice the better I will get.

Thank you

- your message came through fine yesterday ~ Gretchen

[Guest guest]

Welcome ,

I'm 31 years old and have had CMT since birth. I am not able to

walk, and have very little use of my hands. I have a caregiver

who helps me with things I can not do such as heavy cleaning,

grocery shopping and sometimes, depending on how weak I feel

that day, helps me with personal things as well. I am unsure

which type of CMT I have. I hope you enjoy our group. I have

found this group knowledge quite helpful so If you have any

questions, feel free to ask. Again, welcome:)

Mis

[Guest guest]

Hi ka here. First wanted to welcome you and say glad that you

decided to join. There is a ton of info at this site. Gretchen does alot

of research for us which is great for us that don't know that much about

cmt. Anyway glad you joined talk to ya later.

ka

[Guest guest]

Hi thanks for the welcome.... The shower is almost as bad I have to watch where

I step or I might slip... Bye for now

Christin

[Guest guest]

Welcome and fellow Buckeye;

I'm Jim, from West Liberty 30 mile or so north of

Xenia. Story sounds much the same only different. I

have either HNPP,CMT1B, or one of the type 2's.

Haven't nailed it down yet. Have bilateral AFOs, am

a young 53 (right) and single and no, I do not look

like Arnold S.

Had always been clumsy and did everthing by main

strength and awkwardness. Started having trouble 3

years ago with burning pain, difficulty handling

change. Met some cousins I'd not seen since I was a

pup, noticed a familiar gait and foot deformity. I

asked and was told about CMT. They had been diagnosed

with Type 2(maybe wrong)years ago. Since then my

balance is much worse, my heels and toes are numb as

well as my two little fingers and now the thumbs on

each hand. Strength is pretty good yet.

The source it seems is our Great Granny from Birmingham

England, Amy (Earp), both her sons, my Dad and his

brother and myself as well as several cousins I mentioned

earlier have been the lucky recipients.

We have a support group that meets in Greenville Ohio,

on the fourth Thursday each month from April thru

October, if you are intrested contact me.

Keep pluggin'

Jim Nash in West Liberty

[Guest guest]

welcome . Glad to have you here in this group. If there is anything

we can do like write Oprah or networks to help you help us become more visable

just send us the adresses. We need all the help we can get so the public

will understand this is a serious problem out here.

Cathleen in Arkansas

[Guest guest]

Welcome this is a great group.

Barb fl.

[Guest guest]

Welcome , we are all friends here. I am sure you'll like it.

[Guest guest]

Thank you so much , it sure made my day to get this message. teresa

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

From: " cindy bothwell " <cindybothwell@...>

< >

Sent: Monday, October 27, 2003 6:30 AM

Subject: Re: welcome

> Welcome , we are all friends here. I am sure you'll like it.

>

>

>

>

>

> For more information, we recommend the

> CMT Today Magazine - $40 per year (6 issues)

>

> CONTACT:

> CMT Today

> R.R. #1 Hillsburg ON

> NOB 1Z0 Canada

>

>

>

>