progression and my story

[Guest guest]

About 14 years ago I was walking 5 miles a day, would come home

and play 3-6 hours of racket ball, in other words I was very

active and loved every minute of it. Well, while walking my

feet would start hurting and I simply thought I needed new

shoes so off I would go to buy new ones to no avail, finally I

was coming home and immediately putting my feet in my pool to

cool them off cause they were so hot and hurting.

I would tell my husband they were on fire and he would say no

they feel normal. That was the beginning of my search for Drs.

I first went to a podiatrist who told me I walked hard and loud

and was obviously killing the nerves in my ankles. So that

started a program of cortisone shots...they helped for a little

while and finally he told me I couldn't have any more because

they would cause the tissue to die away and I would be bone on

bone. GREAT.

I then went to my family DR. who thought I had tarsal tunnel

syndrome and made me these crazy boot things that I had to wear

at night. They too helped for a while. Then my feet started

getting cold and hot and once again my husband said they felt

normal.

Now thru these 14 years I went to 14 different Drs trying so

desperately for an answer to these feet that hurt so bad I

wanted them cut off. I did go to another podiatrist who put me

on Vit b6 100 mg 3xa day for electrical shooter pains and

quinine for my leg cramps, yes my legs were cramping so bad I

couldn't sleep not to mention how sore they would be the next

day. Both of these things worked for me like instantly.what a

relief.

Well, I finally went to a Neurologist my 3rd by the way who

said I had CMT in his opinion but my insurance wouldn't cover

the DNA test. Oh and now my hands and arms are starting he said

but I really hadn't had any symptoms YET. That was 3 years ago

and I would say the numbness in my fingers started about 6

months ago but I was losing my strength about 4 years ago and

wondered what was going on as I was always so strong but

couldn't even open a baby food jar.

I have just recently started dropping things, even my fork

while eating and get tremors occasionally. I do have an

appointment to see my Neurologist again next wed. My Reg MD

wants him to check me out since I do have these latest symptoms

so in reality he will just tell me how I much I am progressing.

Gee I can tell him that.

Also about a year ago My husband installed hand rails in the

bathtub and shower and I was feeling frightful of my balance

and about a month ago I took my last tub bath as I don't have

the push off to get out nor to get up when I fall, if that

isn't a cute mess. I have had to crawl to places for help like

a close by fence or chair.

Also about 4 years ago is when my feet started getting deformed so far mainly my

right foot but the left is starting I have noticed. I

have broken my ankle 2 years ago and then restrained it on

another fall, broke my collar bone about a year ago and so far

so good I have just strained tendons on my falls and no more

breaks.

I got my AFOs 2 1/2 weeks ago and wore them to much in the

beginning and got blisters and threw my back out of whack

but all is mended now and am back into my AFOs.

And today I get to have them for 3 hours. I do feel safe in

them and love them. Just wish I would have done them right in

the first place.

I also bought a REBUILDER, its a foot bath that has Epson salts

in it and another liquid that stimulates the electrode that you

put in the water and it stimulates the nerves and especially

the muscles in my legs, I sleep so much better when I do it. I

don't have to use it every day now either, I also put my fingers

in it for a treatment and my hands aren't numb at all the next

day until late evening. It is expensive $399. But then so is

all the meds we take.

My Neurologist worked me up to 2400 mg of Neurontin gradually

and I was on that for 2 years but my brain just wasn't working

so I weaned down to 1200 and it worked fine. I am even thinking

of cutting it back to 800 mg and see how I do.

My mother died never knowing what was wrong with her but she

cried everyday telling us we just couldn't imagine the pain she

had in her feet. She also had the deformed looking foot and then

her hands did also. My Aunt, her sister, also has it and my

niece and a cousin on my mothers side, that's all we know for

now, it has become a family joke we ask hey do your feet hurt?

I think I have covered my saga, I feel fortuante that I wasn't

like alot of you having it since birth and being unable to do

things all of your life, my youngest daughter is showing the

signs and I simply tell her to enjoy all she can while she can

and worry about tomorrow only when it comes. She is 26.

And as a child I did walk on my tip toes even ran on them and

so did this daughter and now my grandaughter of 5 does and has

since she first started to walk. Guess I will be staying on the

alert for her.

I do enjoy this post and would love to hear more about your

story.

in Oklahoma