So glad to have found this site

[Guest guest]

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.