introducing myself

[Guest guest]

Hi. I have been reading the posts for sometime now and have

really enjoyed them. Recently several new members have introduced

themselves so I thought I would too.

I am 45 years old, and a single mom to three kids: ages 21,

18 and 16. I have had problems since birth. But because they

were so minor, my parents never thought to take me to a doctor.

I was just considered clumsy and a little slow when trying to

run as a child. I was finally dianosed at the age of 40: CMT type 2.

When I was born, my toes looked too small and the left foot was

turned out. As a baby I wore special shoes at night that had a

bar between them to straighten out the left foot. I wore those

for a year. After that, I seemed to have a pretty normal childhood.

I could run and play, but I ran a little slower. By the time

I turned 5, I noticed every summer I always suffered a sprained

ankle, sometimes 2 in one summer! In the winter, we went roller-skating.

No matter how hard I tried, my balance was terrible and I spent more time

falling

down than skating. Still, my parents never saw a need to take me

to a specialist. Then, when I turned 20, I noticed I was getting

fatigued.

I always thought my health problems were because I was either

inactive or over-weight. Had my first baby at 25. Fatigue got much

more noticeable; an every other day thing. At the age of 30, I

injured my foot at an arobics class. Saw a foot doctor for the

first time. On the X-rays he took, the pain that wouldn't go

away was arthritis and he could see many deformites in my feet.

(High arches, etc.) He told me I should have been fitted with

orthoic inserts for my high arches when I was a teenager. Also,

when I was a teenager, I noticed I wore out the heels on my shoes

unevenly, because my ankles rolled outwards. As I got older, I

found much relief in wearing high top athletic shoes. I could

no longer wear dress shoes, even if they didn't have a high heel.

The hard leather hurt my feet over all. When I turned 40, I had

to see a new foot doctor. When he saw my feet and legs for the

very first time, he said, " Did you know you have Charcot-

Marie-Tooth disease? "

He insisted I go to the nearest University Hospital to get tested.

He was right. My neurogist had me fitted for AFOs and I take

one Neurontin 400 mg pill a day to keep my calves from cramping

up at night. Meanwhile, the fatige kept getting worse.

I had to quit my job, and am in the process in filing for SSD.

Only my youngest child (16), shows signs of having CMT. I was

also waiting till she was an adult and had her own health

insurance before I sent her to a doctor to be dianosed. But,

she has 2 more years of high school and finds PE to be hard on

her. If it looks like she could flunk PE, then I will get her

dianosed so she can be excused from gym.

I hope I didn't bore anyone with my long story. I so enjoy reading

the posts. It makes me realize I am not alone.

blainejayjane