New Member

[Guest guest]

Kristi:

Thanks so much for the kind words. And I am terribly sorry you had

such a bad expierence with the doctors.

That was definitle NOT my case. These doctors were sincerely open about

this DIAGNOSED CASE of CJD. Just because they were not familiar did not

stop them from caring.

I went to the Internet as soon as the Neurolgist gave us the diagnosis.

I printed out 6 pages

about the disease and gave a copy to every

medical personelp that came into his room. This included doctors,

nurses, CNA, NA even

MTS drivers and EMS/EMT. One teacher brought her students into te room

and she took the copies and made her own set giving eachstudet their own

personal copy.

So again I say,POOR DOCTORS . Perhaps not every one had a bad

experience. I truly am sorry for my husbands doctors they were truly

devistated and knew not what to do. You woulld have to know the case to

understand.how they felt. Practcally evrything he was experiencing was

the very same symptoms that they see every day with renal/dialysis

patients. But they had never had any of them to have CJD. It wasn't

like they didn't care..they truly did not know. But you can rest

assured, this small hospital now KNOWS what CJD is , but like everyone

else they don't know how to stop it or cure it.

Hopefully this will be where we as a group will come in. Thanks again

for caring.

Betty

[Guest guest]

Betty, I'm so glad you didn't have the problems that I did. I'm also glad

that you handed out that literature. The doctors really need to be informed.

My mom's last dr. (the one that mentioned this disease) was so interested

when I was telling him

about CJD. I told him that I got this info. from the internet. I really

liked him.

He really cared.

Oh well,

Thanks again,

e

[Guest guest]

Welcome to the group Kathy. I went to a new Dr. yesterday, and he seemed very

interested in Mirapex. He told me to send him something on RLS, as he has

many patients who have it. I've been really busy lately and am starting to

travel again so you might not hear from me for a while. But you know my heart

is with all of you. Kathy, go to Jill's website, she has tons of stuff on it

regarding alternative therapies. Her website is gunzel@....

[Guest guest]

Welcome to the group Kathy. I went to a new Dr. yesterday, and he seemed very

interested in Mirapex. He told me to send him something on RLS, as he has

many patients who have it. I've been really busy lately and am starting to

travel again so you might not hear from me for a while. But you know my heart

is with all of you. Kathy, go to Jill's website, she has tons of stuff on it

regarding alternative therapies. Her website is gunzel@....

[Guest guest]

Welcome to the group Kathy. I went to a new Dr. yesterday, and he seemed very

interested in Mirapex. He told me to send him something on RLS, as he has

many patients who have it. I've been really busy lately and am starting to

travel again so you might not hear from me for a while. But you know my heart

is with all of you. Kathy, go to Jill's website, she has tons of stuff on it

regarding alternative therapies. Her website is gunzel@....

[Guest guest]

Hi Kathy! Welcome Aboard! It's so nice to hear from a nurse that has the

same feelings I do (toward doctors) My mom also had this disease. She had a

memory loss in Aug. 98 & died in Jan. 99. CJDVoice will really help. I'VE

LEARNED A TREMENDOUS (sp?) AMOUNT about this disease. Since the doctors

didn't want to help I've been greatful to get wonderful information through

the internet. Sadly,

we're on our own. It is a jungle out there & it's up to us to care for our

loved ones & somehow come up with a cure. (because the doctors certainly

don't give a damn)

Take care & God Bless,

e

[Guest guest]

Hi Kathy:

My name is Betty and I live in Surfside Beach, SC.

My husband was 66 yrs. when he died Dec. 5, 1998. He was diagnosed with

CJD 10 days prior to his death. He had every classic symptom, the

jerking, could no longer feed himself, could not talk, no longer

walking, he becae as a little child and then went into a coma 4 days

before he went home to be with the Lord. He ever became violent jus

aggitated, hallucinations, yelled, cried, and the worst fear on his face

that I had ever seen. He was a totally different person. He went from

a precious,humble, loving, caring compassionate person to this man I had

never known. SCAREY????

Prior to this time he had been hospitalized many many iems. He had been

on dialysis for 2 years. And all his symptoms could have been related

to the renal failure and/or the dialysis. He also had many bouts with

pneumonia. He had it in one lung during this last hospitalization and

the seek after we were told he developed in his other lung. Then he

died at the end of that week.

Where this came from no one knows and we can only speculate. He had

many blood transfusions, many surgeries including heart surgery, grafts,

fistlas, angioplasty many ties. So it could have come from an of thosie.

His meat intake was doubled for the last year,because of such a low

protein level. He seemed to be doig fine. His blood work was great and

yet all these symptoms returned. The doctors called these " episodes " ..

Which he had before but just not quite so severe.

I wish there was something I could do to help, but the best thing I have

going in that department is PRAYER. You can be sure that I will pray

for you, your father and family. I am always just a prayer away if you

should need me.

In Christian Love....

Betty

[Guest guest]

Betty Thanks for the word of encouragement. We will be battling this

until the end I know. Currently my father has the jerking movements,

forgetfullness, confusion, rapid eye movements, agitation, anger and he

startles easily. He is on numerous medication, but nothing works longer

than a day. The neurologist he has is wonderful. I love him. He has told

me to be invloved in any research I can get dad into. So I am working on

that. The hell my mother is going to go through I hate for her. They

live 3 hours from me. I have 5 kids, so my life is so busy. But I must

find time to stay with my father why he recognizes me. Right now he

rembers nothing after about ten minutes. He is still able to eat but the

cooridnation is getting worse. He has only had one surgery and no blood

transfusions. So I believe this is the sporadic type. I guess they wil

only prove it when he dies. May the Lord take him home quickly. And yess

I beleive in the power of prayer. Please feel free to email me

personally at kbredahl@...

God Bless You

Kathy

ICQ 2551093

[Guest guest]

Kathy -

Welcome to our " family. " When my family first found out about my Dad, I

thought we weren't getting all the answers as none of us is connected to

the medical field. Then we found out it wasn't us at all, the doctors,

themselves, didn't know what was happening, nor what to do to find out. We

all have a sad story or two about our beloved family member and understand

the pain, confusion and suffering you and your family are dealing with now.

Come to us whenever you need to - at least we'll let you release your

frustrations and not say a thing.

Shar

[Guest guest]

Kathy -

Welcome to our " family. " When my family first found out about my Dad, I

thought we weren't getting all the answers as none of us is connected to

the medical field. Then we found out it wasn't us at all, the doctors,

themselves, didn't know what was happening, nor what to do to find out. We

all have a sad story or two about our beloved family member and understand

the pain, confusion and suffering you and your family are dealing with now.

Come to us whenever you need to - at least we'll let you release your

frustrations and not say a thing.

Shar

[Guest guest]

Kathy -

Welcome to our " family. " When my family first found out about my Dad, I

thought we weren't getting all the answers as none of us is connected to

the medical field. Then we found out it wasn't us at all, the doctors,

themselves, didn't know what was happening, nor what to do to find out. We

all have a sad story or two about our beloved family member and understand

the pain, confusion and suffering you and your family are dealing with now.

Come to us whenever you need to - at least we'll let you release your

frustrations and not say a thing.

Shar

[Guest guest]

Hi Gloria,

I am new to this list also, by about a week. I took the levedopa also. It

will eventually make your symptoms worse. It was like heaven at first......

but eventually it caused me to suffer day and night, I could not even sit

down. It in my arms and legs. I would advise against it...I would suggest

Permax or Mirapex. I just moved from Permax to the latter. I am very happy

with it.

Cindy

New member

>From: Gbello5353@...

>

>Hello everyone!

>I am new at this. I just joined this support group and I am introducing

>myself and I hope to hear from you, too.

>I am a 57 year old female. I have experienced restless leg syndrome since

I

>was 24 years old. I had no idea what it was. I came to call it my " crazy

>legs " . It occurred very infrequently at first and I had no idea what this

>strange sensation was. The problem worsened gradually. For awhile, taking

an

>aspirin at night seemed to help but lost its effectiveness. Then I would

try

>to sleep with my legs raised. Taking hot baths before bedtime helped some.

>Needless to say, and I am sure you understand, that I lost a lot of sleep.

>Then I heated my " Bed Buddy " , you know, that commercially made white " sock "

>with blue handles on the ends....filled with rice .and you heat it in the

>microwave for about 3 minutes and it produces moist heat. I put it under

my

>feet and took it to bed with me. Really helped for awhile. THEN I started

>getting " restless BODY " that same sensation crept from my feet and legs to

my

>hands, arms, and upper body. Then, I REALLY got mad!! My doctor heard of

>these symptoms from other patients but knew very little about it. He

>suggested I take my calcium pills at night.....didn't help. We also tried

>Klonopin with no success.

>THEN, my wonderful, concerned husband read in the JAMA (New England

Journal)

>about this condition and that Levodopa has been helpful for many sufferers.

>SO, I shared this with my doctor and after a lengthy discussion, he started

me

>out with a prescription of 15 pills ( Carbidopa/Levodopa 25/100

>tablets...generic form of Sinemet..). IT WORKED the very first night!!!!!.

>The only side effect I experienced was mild headaches after taking it for 4

>nights. They lasted about a week and then stopped. No problems since. If

>the symptoms begin before I take the pill, I take the pill and within 15 to

30

>minutes, the symptoms go away and I fall asleep!!! And I sleep all night.

>I have not talked to anyone who has taken this medication. If any of you

>have, please write to me.

>Thank you for listening. I am so glad to have found this support group. I

>came across it yesterday.

>Gloria

>

>------------------------------------------------------------------------

>We have a new web site!

>http://www.onelist.com

>Onelist: The leading provider of free email community services

>------------------------------------------------------------------------

>This forum is for support only. The information posted to this List is for

support purposes

>and is not intended to replace the examination, diagnosis and treatment of

a licensed

>physician and no such claims are inferred.

>

[Guest guest]

In a message dated 10/11/99 10:12:50 AM Eastern Daylight Time,

Lmesewell@... writes:

<< Wish me luck! (140/140/120) My husband is doing

this with me (190/190/165). I will keep you posted on our success - next

stop, Ketosis! >>

Hello and welcome to the list and good luck!!!!!!!!!!!!!

[Guest guest]

,

Welcome to the list, your husband too!!

Hugs

Penny---Ohio

173/158/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

Welcome to the list Lance

Hugs

Penny---Ohio

173/157/130

Goal for TG ----- 154

!!!!!!!!Go Dolphins!!!!!!!!!

List Co-Moderator---ICQ#51429926

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

Welcome - This is Jill.

Congrats on the wedding- you have enough stress with the CMT and rehab plus

a wedding- yikes! Good luck with the wedding plans and the rehab. Unlike

you I do not have flat feet- I have an extrtemely high arch which makes

buying shoes impossible- especially since I have a wide foot as well...

Glad to have you aboard.

Jill

>

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS CMTUS (AT) onelist (DOT) com>

>Subject: New member

>Date: Tue, 08 Feb 2000 16:02:14 -0500

>

>

>

>Hi everyone. Some of you may know me as Starr from the CMT chatroom and

>more recently, the CMT weight management list too.

>My name is and I am 23. I live in Philadelphia with my fiance

>Alan, whom I will be marrying in just 6 months.

>I was dx'ed with CMT type 2 almost 2 years ago. I am currently on

>disability too from the CMt as my symptoms are severe.

>I just had a triple arthrodeses done to my left ankle back in Oct which

>is basically just an ankle fusion. I was sick and tired of wearing

>braces that never helped me and I certainly didn't want to wear them

>forever. Sooo, surgery was my last option and I am quite happy with the

>choice I made. I am still in physical therapy for my ankle now and that

>has made a world of difference. If I didn't have a wedding coming up so

>soon, I would probably have the surgery done to my right foot as well,

>but for now I am waiting for the right time.

>I think I have alot of the same symptoms that many of you have, but I

>will tell you just a couple anyway.

>Severe chronic pain all mver my body, weakness, loss of feeling,

>numbness, poor balance and proprioception, bunions, claw/hammertoes,

>flat feet, tingling & shocking sensations. You name it, I have probably

>had it!!

>My brother was the first one dx'ed in my family. Then me and most

>recent my mom who found out last March.

>I hope to learn alot from this list and I can't wait to get to know all

>of you.

>Fell free to email me personally as well. I love to hear how other

>people are coping with this disease!!

>

>

>

>

>---------------------------

[Guest guest]

Welcome - This is Jill.

Congrats on the wedding- you have enough stress with the CMT and rehab plus

a wedding- yikes! Good luck with the wedding plans and the rehab. Unlike

you I do not have flat feet- I have an extrtemely high arch which makes

buying shoes impossible- especially since I have a wide foot as well...

Glad to have you aboard.

Jill

>

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS CMTUS (AT) onelist (DOT) com>

>Subject: New member

>Date: Tue, 08 Feb 2000 16:02:14 -0500

>

>

>

>Hi everyone. Some of you may know me as Starr from the CMT chatroom and

>more recently, the CMT weight management list too.

>My name is and I am 23. I live in Philadelphia with my fiance

>Alan, whom I will be marrying in just 6 months.

>I was dx'ed with CMT type 2 almost 2 years ago. I am currently on

>disability too from the CMt as my symptoms are severe.

>I just had a triple arthrodeses done to my left ankle back in Oct which

>is basically just an ankle fusion. I was sick and tired of wearing

>braces that never helped me and I certainly didn't want to wear them

>forever. Sooo, surgery was my last option and I am quite happy with the

>choice I made. I am still in physical therapy for my ankle now and that

>has made a world of difference. If I didn't have a wedding coming up so

>soon, I would probably have the surgery done to my right foot as well,

>but for now I am waiting for the right time.

>I think I have alot of the same symptoms that many of you have, but I

>will tell you just a couple anyway.

>Severe chronic pain all mver my body, weakness, loss of feeling,

>numbness, poor balance and proprioception, bunions, claw/hammertoes,

>flat feet, tingling & shocking sensations. You name it, I have probably

>had it!!

>My brother was the first one dx'ed in my family. Then me and most

>recent my mom who found out last March.

>I hope to learn alot from this list and I can't wait to get to know all

>of you.

>Fell free to email me personally as well. I love to hear how other

>people are coping with this disease!!

>

>

>

>

>---------------------------

[Guest guest]

Welcome - This is Jill.

Congrats on the wedding- you have enough stress with the CMT and rehab plus

a wedding- yikes! Good luck with the wedding plans and the rehab. Unlike

you I do not have flat feet- I have an extrtemely high arch which makes

buying shoes impossible- especially since I have a wide foot as well...

Glad to have you aboard.

Jill

>

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS CMTUS (AT) onelist (DOT) com>

>Subject: New member

>Date: Tue, 08 Feb 2000 16:02:14 -0500

>

>

>

>Hi everyone. Some of you may know me as Starr from the CMT chatroom and

>more recently, the CMT weight management list too.

>My name is and I am 23. I live in Philadelphia with my fiance

>Alan, whom I will be marrying in just 6 months.

>I was dx'ed with CMT type 2 almost 2 years ago. I am currently on

>disability too from the CMt as my symptoms are severe.

>I just had a triple arthrodeses done to my left ankle back in Oct which

>is basically just an ankle fusion. I was sick and tired of wearing

>braces that never helped me and I certainly didn't want to wear them

>forever. Sooo, surgery was my last option and I am quite happy with the

>choice I made. I am still in physical therapy for my ankle now and that

>has made a world of difference. If I didn't have a wedding coming up so

>soon, I would probably have the surgery done to my right foot as well,

>but for now I am waiting for the right time.

>I think I have alot of the same symptoms that many of you have, but I

>will tell you just a couple anyway.

>Severe chronic pain all mver my body, weakness, loss of feeling,

>numbness, poor balance and proprioception, bunions, claw/hammertoes,

>flat feet, tingling & shocking sensations. You name it, I have probably

>had it!!

>My brother was the first one dx'ed in my family. Then me and most

>recent my mom who found out last March.

>I hope to learn alot from this list and I can't wait to get to know all

>of you.

>Fell free to email me personally as well. I love to hear how other

>people are coping with this disease!!

>

>

>

>

>---------------------------

[Guest guest]

<< what do people with cmt feel ( are we tired sore and ache) is this normal

>>

Hi . Welcome. You'll find that we are a varied lot, with many

differences as well as similarities. Tired, yes, most CMTers are. Sore and

ache, perhaps 50% of us. Some are simply very weak and perhaps numb.

Regarding other disorders, CMTers can have any that other folks have. I've

met, in cyberspace, CMTers who also have Multiple Sclerosis, Parkinson's,

fibromyagia, or some other well-known disorder.

I'm sorry to hear you also have Lupus. Please feel free to tell us more, What

symptoms led you to be diagnosed with CMT? Tripping? Balance problems?

Progressive weakness? Other?? How are your feet? Hands?

Do you have a family history of CMT?

[Guest guest]

Hi ,

How are you and your child doing now?

Best of luck with your disability application.

I'm in Seattle - retired - Type 2.

Kat

[Guest guest]

Hi ,

How are you and your child doing now?

Best of luck with your disability application.

I'm in Seattle - retired - Type 2.

Kat

[Guest guest]

Hi ,

How are you and your child doing now?

Best of luck with your disability application.

I'm in Seattle - retired - Type 2.

Kat

[Guest guest]

In a message dated 7/13/00 2:43:02 PM Central Daylight Time, ktbugg54@...

writes:

<< THERE FROM MY

AREA?

KATIE >>

Hi :

I'm not from the Nashville area, having grown up in SW Illinois. I am doing a

family search for my genealogy family tree, and wonder if there could be a

family connection. Do you have any McGill people as relatives. My

Green McGill was born in 1834 close to Nashville, TN.

I have had CMT from early childhood 60 yrs. ago, but it was not diagnosed at

that time. Over the years, it has gotten worse, but I was able to continue my

teaching-educational career for 43 yrs, but felt I had to retire in 1992. My

hands are more claw-like and my balance is not great anymore-- thinking about

a wrist walking cane. I'm fortunate not to have pain (other than shoes

rubbing my toenails), nor electrical-type shocks.

Would like to hear from you,

CMTer in TX

[Guest guest]

In a message dated 7/13/00 2:43:02 PM Central Daylight Time, ktbugg54@...

writes:

<< THERE FROM MY

AREA?

KATIE >>

Hi :

I'm not from the Nashville area, having grown up in SW Illinois. I am doing a

family search for my genealogy family tree, and wonder if there could be a

family connection. Do you have any McGill people as relatives. My

Green McGill was born in 1834 close to Nashville, TN.

I have had CMT from early childhood 60 yrs. ago, but it was not diagnosed at

that time. Over the years, it has gotten worse, but I was able to continue my

teaching-educational career for 43 yrs, but felt I had to retire in 1992. My

hands are more claw-like and my balance is not great anymore-- thinking about

a wrist walking cane. I'm fortunate not to have pain (other than shoes

rubbing my toenails), nor electrical-type shocks.

Would like to hear from you,

CMTer in TX

[Guest guest]

In a message dated 7/13/00 2:43:02 PM Central Daylight Time, ktbugg54@...

writes:

<< THERE FROM MY

AREA?

KATIE >>

OOPS , forgot to sign off--

CMTer Bud in TX