RE: So glad to have found this site

[Guest guest]

Hello ,

I am suprised to hear your Doctors don't know much. Every Dr. I have

gone to knows at least a little bit.

[Guest guest]

...Patte here....welcome to a wonderful group of people. I am new

here myself but this site is awsome for whatever you need or want. Hope

this finds you good this day. Blessings to you and please email when you

can. Patte

Love Can Build A Bridge

Enough

>From: " sandieluv55 " <sandieluv55@...>

>Reply-

>

>Subject: So glad to have found this site

>Date: Mon, 17 Jul 2006 02:17:29 -0000

>

>Hello everybody. My name is and I was diagnosed in 2001, with

>CMT, my orthopedic doctor thought that I had it, and sent me to a

>neurologist for confirmation. That same year I was diagnosed with heart

>disease and had to have open heart surgery, as well as gall bladder

>surgery.

>

>I had been diabetic since my 20's, and always thought my foot

>problems were related to that. I was told I had diabetic neuropathy, but

>after the ENG and nerve conduction tests, the MRI's etc. I was told I had

>polyneuropathy from the diabetes and the CMT.

>

>I had suffered from ankle weakness, tripping, falling, couldn't stand in

>one place without moving constantly, and had lost all feeling in my feet.

>I had to move because I had to quit my job and go on disability and had no

>insurance for 2 years until I got my disability going.

>

>Today I am in a wheelchair, I cannot walk very far, I keep walking holes in

>my feet, and 2 years ago while in the hospital for my heart, I had a small

>cut on my right foot, and after having congestive heart failure, kidney

>failure they came in and said my foot was turning black, that I had a

>resistant staph infection, and would have to have part of my foot

>amputated.

>

>I couldn't believe it, my surgeon said they might have to take the whole

>foot or maybe part of my leg, but they finally found an anti-biotic that

>would work somewhat, and they saved most of my foot.

>

>I have been to a lot of doctors and none of them have had any idea what CMT

>was, since the original neurologist diagnosed me. I found out it was

>considered a form of MDA, and called them, and they sent me to a clinic,

>where I thought I would find out some new information, but the doctor there

>did not seem interested in giving me any information, just wanted to check

>and make sure I had it, so I could join MDA.

>

>I tried to ask him questions, but he was short and uncooperative. I was so

>disappointed. I have never talked to anyone who had CMT and wondered what

>was " normal " for CMT or what was related to diabetes, or if it is just old

>age, I am 50 now and need to talk to someone. I would love to chat with

>someone on the phone, or IM on the computer in real time.

>

>I'm not suhow this works, I'm not a computer whiz. lol, but I hope this

>message gets to you. I found this website through going to the CMT website.

> I enjoyed reading some of the topics, but couldn't send any cause I

>wasn't a member of , so I signed up. lol

>

>I just recently had custom shoes made and inserts, I had AFOs made right

>before I had my foot amputated, and haven't been able to ever wear them,

>and I've had metal braces since 1996, as I have foot

>drop in both feet.

>

>I also developed another infection in my foot after the amputation and had

>to have two surgeries to remove the bones in my foot that were infected. I

>have been off my feet for two years. I am

>just now able to put some weight on my foot and try to walk, but I find my

>lower back kills me when I try to stand and on top of that I gained 50

>pounds while I have been off my feet completely.

>

>I need to get some exercise, but since none of my doctors really know

>anything about CMT they just tell me to do some stretching and leg lifts

>and if I could find a pool, it would be helpful to swim. But of course, I

>have no access to a pool. I'm trying now to find out if they have one I

>could use cheaply at FSU.

>

>Well, as you can see, I talk too much, even if its

>only typing words. LOL If anyone of you would like to talk to me,

>please contact me at Sandieluv55@... <mailto:Sandieluv55@...>

>or Sandieluv55@... <mailto:Sandieluv55@...> .

>

>I have learned a lot just by reading some of your topics here. I live in

>Florida, so if there are any of you from Florida, Georgia or Alabama, that

>would be nice to talk to you. I have been blessed with wonderful family,

>friends and my faith in God, so I try to keep a good sense of humor, and

>think positively, but I still have had to take some depression medicine.

>

>I just found out about financial help having the DNA tests done, so I am

>going to be working on getting that done. My neurologist a couple years ago

>tried to get them done, but the medicare and medicaid would not pay for

>them.

>

>I have an extremely curved right foot, very high insteps, very wide

>foot,and my right ankle turns over extremely bad. My new shoes help with

>this, but since I can't feel my feet, I can't tell where I'm putting my

>feet, and they seem to make my feet very tired.

>

>Do any of you have any deformity in your feet? and is it in both feet, my

>right foot seems to be affected the most. If you have any ideas about

>exercise, medicine, vitamins, or where to find a

>good doctor let me know. I appreciate your patience with such a long

>letter. Take care and hope to hear from some of you.

>

>

>

>

>

>

[Guest guest]

Hi there and welcome to this group... You will sure will get alot of

response to questions and alot of help here. I too live in Florida,,, right

outside of Tampa. Are you up in Tallahassee? I am 57 and left foot drop and

just got an AFO for the first time and it sure does help. Write when you can.

Take care,

Elaine