Join Now
Join over 8652 active members:
 

Scared and Alone....What do I do?

My name is Cyndi. I am 30 year old mother of 2 and have a wonderful stepson and loving husband. I have always known that my father and sister and uncle where diagnosed with Charcot Marie Tooth. I also knew that my fathers mother had Polio.
Well my life has been changing these past couple of years and I never knew what to blame it on. I was a foster child from 9 to 18 so did not know much about my family history. I have always wondered whether this would affect me or my children, but thought I had a pass.
Recently my body has had a lot of changes, in May of 2001 I gave birth to a handsome baby boy. In October I was diagnosed with Ventricular Tachycardia and an Implatable Cardiodefibulator was placed at this time. Didn't think to much of it, docs said it was where my heart muscles were not strong enough to slow my heart rate down. I then gave birth in December of 2002, due to docs telling me if I did not have another child before June of 2002, I would not have any more kids.
Growing up I always new I was different, everyone just said I was clumsy. I was not cordinated to run like the other kids, my hand writing has always been messy, and I stutter a lot. I walked very heavy and could never walk quietly, this would cause a lot of problems when trying to sneak the halloween candy (lol).
Well in the last 6 months to a year I have had so much pain from the lower back and hips down. My toes curve to the outside, I have very high heels, and arch. My arms and legs are very weak, it hurts to move. I struggle to brush my own hair, or hold my arms up. I can not find any shoes that fit comforatble, and I walk on the inside of my right foot, which causes me to go through shoes very quickly.
I still fall constantly, the nurses at the ER know me by name, and know that I mainly go for falling and hurting my ankles.
I recently was reunited with my sister (who has charcot marie tooth level 5), and noticed that I favor a lot of her physical features. I started to ask questions and began learning a lot about this condition. I am now in the process of being tested for it, but I don't know how they will test being that I can not have the two main test, being that I have a metal box in my chest that send electrical shocks through my body.
I am worried that the day will come where I will be unable to do anything for myself and this will be left to my husband and children. I am so lost and alone, and just didn't know who else to turn to. I am scared and alone. So I guess I am writing this, hoping that someone will have some advice on how to adjust to the changes emotional and physically. Also if any one knew of ways to diagnosis with out the shock testing, MRI, or even the DNA ( I am a mom of 3 boys, that does not work, because it hurts to be up on my feet or to sit or to lay, which means I can not afford to do DNA testing!)