Welcome

[Guest guest]

Hi ,

I know how you feel. I was diagnosed at 22, but saw symtoms at 16. Got AFOs at

23, but only wore them for long walks. By 30s I walked with a cane when I knew I

would need balance (long walks or in crowded places) Then walked with a cane and

AFOs all the time up to 40's. I am now 43 and use an electric scooter to get

around where you have to be standing for a long time or walking around. I just

got it a couple of months ago, so I am still adjusting to the change. It

actually has been very liberating and I wonder why I took so long to get it.

(scared, I guess) Each stage is scary, but remember, that you have adjusted

great up to now. Having and raising 4 children is enough to make marathon

runners tired! Please feel free to email me personally because I understand what

you are going through. Where are you located?

Jackie

[Guest guest]

Welcome ! I have been taking Vitamin C more frequently and there are days

when I do feel better. I have read a lot of posts about people taking C and

having great results.

Take Care,

Elaina/NY

PS. Hilton Head must be so beautiful this time of year! I'm a lighthouse fanatic

and just love Hilton Head and Cape Hatteras.

[Guest guest]

Welcome , you will find this a great site and really helpful, fun people..

Elaine

[Guest guest]

,

Welcome to the group! Hope you learn alot as I have!

Dawn

[Guest guest]

Hi ,

Welcome to the list!! I really admire you for admitting how you really feel. I

think we have to be honest with ourselves so we can process everything and start

to heal. I do not like to be told how I should feel about CMT. I am the way I am

because of many different life events know what I mean?? This list has helped me

to change many things about how I view CMT. Again welcome and thank you for your

honesty.

[Guest guest]

Hi and welcome to the group. I hope you find this very positive and

helpful.

Take care,

Elaine in Florida

[Guest guest]

Welcome welcome !

Elaina.

[Guest guest]

WELCOME NICOLE,

Thank you for your introduction. I am Joana from London, have CMT type 1. I hope

you would enjoy to be part of our group. It is so great to be

able to share with each other and here we can learn a lot as well,

believe me!!! Fell free if you want to email me. I wish you all the best and

enjoy !!!!!!

Take Care

Joana

[Guest guest]

,

I too have CMT only diagnosed later in life. All my life I had the same feet

you have described and my ankles were so darn weak that I had many sprains. Why

I ever picked nursing as a profession I will never know. Being on my feet all

the time was not the most comfortable way to spend my work day. The ball of my

foot soon developed fissures that split, bled, and had to be taped for me even

to stand up.

I also found out that I had partial spina bifida when I broke my back in the

mid 80's after a fall. Since then I have had feet surgery at ayo Clinic with

them never saying a word about the possibility of CMT. Finally, as my ankles

were rolling as my peroneal nerve was degenerating, I went to a very trusted

podiatrist. After an EMG tech suggested CMT was a possibility it was

then confirmed. I now have had bilateral triple arthrodesis which was

necessary.

You are not alone. Vit C and another supplement has helped me immensely. I no

longer have charlie horses that had my husband scurrying for the ice bags to

pack me up at night. I have been " charlie horse " free since last summer. IT

IS AWESOME!! It is far better to know what is the problem than not to know.

There are things that can help so keep your chin up and God Bless!

Candy

[Guest guest]

Welcome ,

My name is Cathleen, I live in Arkansas now but I lived in a small town called

Buna, Texas until 5 years ago. I loved the doctors at the Houston MDA clinic.

I know you will love this group. I have learned a lot here. Best of all you now

have people to talk to who know what life is like living with CMT every day.

Again welcome to this CMT family.

Cathleen in Arkansas

[Guest guest]

Hello ,

I am a new member as well. I have found the group to be very supportive and

informative. I am 37 years old and live in Somerset, Kentucky. I lived just

south of Houston several years ago. My children have a grandmother, aunts,

uncles and plenty of cousins still living there. I don't use braces, although my

doctor is encouraging it. I can't take that step yet.lol I have had three

surgeries and will be having another in early fall. My last surgery was on June

21 of this year.

[Guest guest]

Welcome ! I also find living with CMT very fustrating!

Please visit our current poll and give us your feedback on using Vitamins and

Supplements for CMT.

[Guest guest]

Hi ,

My, you have had a time of it! I have had not terrific luck with the MDA

clinic. The best physician I have found is a Doctor of Physical Medicine and

Rehabilitation. She understands both the implications of CMT and what can be

done to minimize symptoms. Your MDA clinic may refer you to one.

Other than that - fatigue is a problem. Sometimes it's hard to figure out when

you are tired or depressed. It's also hard to feel good about yourself when

weight is an issue like it is for me and people tell you all you need to do is

eat less and exercise more!

I have found I have more energy when I do water exercises and stretches, but

warm water is a must!

As one phyical therapist said to me one day when I was really down in the dumps,

" It's okay to have 5 minutes of self-pity a day, but not on my time! " Keep the

faith.

Penny

[Guest guest]

Hi ,

Tt sounds as if you and I are in the same boat. I am fortunate to have insurance

but it's CHA (can't have anything as my doctor puts it). There are plenty of

things I need it won't cover. I'm also

attending school and wondering if anyone will hire me once I get finished. I'm

sorry to hear about your depression and self-esteem. If it helps I do

understand. I will keep you in my thoughts and

prayers. This group has many wonderful people in it. Some days just knowing

there is someone I can talk to helps.

[Guest guest]

Welcome ,

What part of Florida? I live in the Tampa area and try to do the best I can

with what I have. I still work full time, it is an office job which sure does

help, and I bikeride and walk a few times a week. You will find this group so

helpful and informative... Welcome again.

Elaine

[Guest guest]

Thank you, Gretchen.

[Guest guest]

Welcome to our gang!!

[Guest guest]

Hi , and welcome to the group! I have CMT type 1 and was just diagnosed

this year. This group is very helpful and supportive. Ask any questions you

may have and someone will proably be able to give you an answer or suggestion to

help. Everyone is great!

Missy

[Guest guest]

Hi :

What a wonderful introduction. And yes, love is truly the only thing that

matters in life. Some of my really good friends and I try to practice living

in the moment, because we know that is all we have. We were never promised

two days. Only one, and this very moment.

Please accept my deepest sympathy for your recent losses. You sure do find

strength in your times of trouble. Bless you.

I am very interested in what you mean by a deteriorating diaphragm. I have

had a shortness of breath since October of 2003. I have had just about every

test known to man to find out why. I do know that the shortness of breath is

not being caused by my heart and any pulmonary issues. My lungs etc are just

fine.

Through the process of elimination, my family doctor has arranged another

appointment with my respirologist again on August 29th. In my humble

opinion, and my family doctors, we think my phrenic nerve is causing a

deterioration in my diaphragm. I know in some cases, CMT can affect the

diaphragm.

What did you do to find out you had problems with your diaphragm? Any help

and/or information you could give me would be gratefully received. If you

wish to email me directly my email address is dgbeckingham@....

Kindest regards,

[Guest guest]

Hello ,

I am more than willing to talk with you please feel free to email me

anytime. Please understand I may not get right back to you do to my busy life

style with 5 kids. So just be patience I will email you as soon as possible.

Heidi

[Guest guest]

Hi ,

I am 45 and just found out about 2 years ago exactly what I had, but have had

the symtoms all my life. The communication between everyone here helps out so

much and everyday someone else learns something else new. It's like a big

puzzle and the more pieces you get the closer you are to, I'll call it, somewhat

of a type of " closer " . Hope that came out right!?? It's really neat knowing

you're not the only one. The funny thing is, it's the little things, things you

wouldn't normally even suspect, that come together.

On the humerous side, everytime I find something else out that

is new to me, I tell myself, " I'm not a screwball afterall! " and that also

works with any other querks I might have!! Lord knows I've got a bunch...Take

it one day at a time and the secret word is " GRETCHEN " SHHHH!!! Don't tell

anyone!! lol..Talk soon..take care...

[Guest guest]

Hi, .....

I, too, am a Pennsylvania - 71 year old female diagnosed about 2 yrs ago with

CMT1B.

Was wondering what, if any, symptoms you noticed in years prior to diagnosis

that may have made you question if something was wrong. I thought I was fine

until about 5 years ago when I started falling a lot and feet became numb and

tingly with a tight sock sensation. After diagnosis, I remembered all the

things starting in childhood that I thought were normal and of course, they

weren't - like my gait etc.

June

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[Guest guest]

Welcome . I am sure you will learn a lot in this group. glad to have you in

our family here.

Cathleen in Arkansas

[Guest guest]

,

Welcome to the group. I am so grateful that I stumbled on this site 4 years ago

because I have learned so much through the posts by everyone. I too live in PA

near Philadelphia and work in the area also. I also have been told that my CMT

is type 2.

Again welcome!!

Sharon

[Guest guest]

,

A great big Welcome!!