Other than Genetics

[Guest guest]

I'd heard over the years, the age of onset was an indicator of which type of

CMT. In 1960 there was probably only two types. Type 1 or Type 2. Mine, being

Type 2 (a clinical diagnosis as I've not had DNA testing) was a new mutation in

our family. I have an older brother who is 11 yrs. older who has had no

problems (he's now 66). I am the only one in my entire family going back many

generations, paternal and maternal sides. I was the only one with a walking

disorder as such. My Dad's mother and all her 4 sisters were bow legged, her

two brothers were long waisted and short legged (a little odd don't you think).

Fortunately for me, I did not inherit those problems. My ancestors did come

from Prussia region in Europe.

When I was born in 1951, I had a cyst on my lower back at the spine with a black

center and small pinhole. My Mom said her mother and sister pushed her into

getting the doctor to look at that spot and to do something about it. Mom

really wanted to leave it alone. The doctor lanced it. (Horrors!!! Today to

think of doing that on a baby, well, I would not have had it lanced.)

The doctor did not remove it then and it was with me for years. Strange as it

is my Mom's older sister's first born son first born daughter had a boy and he

was born with this same type cyst on his forehead close to being in between his

eyes. He was a handsome boy but it distorted his looks some by the way he

looked out of his eyes but she did nothing about it as she thought it was too

dangerous to mess with and her doctors said to leave it alone as well. Today,

he doesn't have the cyst. He grew out of it, it went away.

I don't know why I have always thought that mine cyst was some kind of

connection, The spinal bifa type opening and nerves and lancing preventing

nerve growth/function. I wonder and will always wonder if my family doctor

lanced mine and it cut the nerves. Then, I think I was okay, took tap and

ballet and no problems at all. You know I did take toe ballet, with the hard,

round, flat toe ballet slippers that had the ribbons that tied up your leg. I

took it long enough to learn a dance routine and have a dance recital. Just

one. Today, it is commonly known not to do toe ballet young, just the flat

leather shoes - so you think maybe it was that activity.

Two other things that happened to me that might be a contributing factor was I

roller skated a lot up and down the driveway and sidewalks. I had those heavy

metal ones that you clamped on your shoes and used a skate key to tighten, etc.

I fell one time on the side of the skate with the wheel nut facing up and landed

on my tailbone. I could not get up immediately. My tailbone was black and blue

for months. I don't recall going to the doctor. Just a childhood fall.

Another thing was I liked Metholatum Petroleum Gel under my nose at night so I

could sleep. I couldn't or wouldn't go to sleep without it, I did this all

through my high school years, then, I realized it didn't look too cool, etc.,

when you go through the wanting to look cool stage. I know now camphor is not

to be inhaled like that. I believe I had a stuffed nose due to a huge

cottonwood tree in our neighbors yard and those little cotton balls were a

problem floating in the air at certain times of the year.

Are any of you members new mutations in your family? Do any of you have

certain things that you think may be linked to atrophy and weakness and the

thought of not being genetic ever run across your mind?

(I must have too much time on my hands....ha!)

I thought of it as like maybe spina bifa (I have no curvature but read where its

an opening etc.) I always had this cyst and in my early 20s I had scratched it

on a zipper and it became infected. I had an appointment with my gyn. doctor,

asked him to look at it and he said he wanted to remove it. He gave me several

local shots around it and if fact he took it out, totally intact and it was a

sack about an 1-1/2 " long and he said it seemed to be attached at base but he

got it. He was thrilled, it was like a trophy! I'm thinking " attached to what,

my spine? " hummmm. He said it was just a sebaceous cyst that was all. He

showed it to me and it looked like it had brain material in it all squiggly

looking matter). gross I know but you get what I'm saying. Anyway, who knows -

but the neurologist would only look into my eyes and give me the reflect tests

and it went no further. To this day I wonder. I did have a spinal tap when I

was 8 when they were diagnosing me, and I'm sure

they addressed it then, no one remembers.

Also, as mine was diagnosed at 8 yrs. of age with surgery at 12, doctors said

Type 2 (after testing in 1959/1960) I've had slow progression it seems.

Right now being obese, sitting in scooter and having the start of pressure

problems is a definite indicator to lose weight. I just dont burn what I eat, I

eat way too much to burn so little, it's a catch 22 situation. The weight loss

surgery is out as I don't want to have other problems in addition to CMT.

Once my husband lands another contract I think I may start a supervised program.

It will be expensive but I need to go back in the other direction, instead of

increasingly adding more weight. I'm carrying around another person or an

already weakened system. It's just so hard being in a hotel room all day and

waiting for him to come home so we can go out to eat at another new place,

another new adventure. I guess I could eat a lettuce leaf and tomato but that's

just not too appealing...ha!

Donna B.