My Introduction

[Guest guest]

Hi everyone,

Two weeks ago I joined your group but I have been depressed so I kept postponing

my introduction. It has helped to read your emails. I am learning a lot and it

helps to see other people are going through the same things.

This year, I will be 40. I was diagnosed with CMT type 1 two years ago. This was

a very difficult process. No one else in my family has any symptoms of CMT. It

took a year to have the diagnosis. I saw a neurosurgeon, two neurologist, an

oncologist and a physiatrist, plus many tests. It was very frightening for me.

The second neurologist I saw did the genetic test so then I was given a definite

diagnosis.

As I was growing up I didn't know why I had high arches, hammer toes, weak

ankles, poor balance....... I have struggled to accept I have CMT. It has been a

difficult journey.

The fun part of my life has been, I grew up in France, my parents are Americans.

I have been living in West Michigan for 12 years now. I am so thankful to have

grown up being exposed to two cultures. I studied psychology in Paris then came

to MI to work in group homes. I wanted to work with people with Mental

Disabilities. In France the care facilities are often about twenty years behind

the quality of care provided in west MI. I really enjoyed my work while I had

the strength to do it.

When I was 18 months old, I had pneumonia. And because of fluid in my lungs, I

was hospitalized. An x-ray showed a shadow near my spinal cord. It turned out to

be cancer Neuroblastoma. The tumor was located in the cluster of nerves going to

my right arm and part of the tumor was wrapped around my spinal cord. I had

surgery to remove the tumor. The doctors gave me 50% chance of surviving the

surgery but told my parents I would be completely paralyzed. A miracle truly

happened and I was not at all paralyzed. Then, I underwent cobalt radiation

treatment. They don't use this kind of radiation any longer because it burns so

much tissue.

The radiation has caused further nerve damage so the CMT symptoms are more

advanced than most people my age. So far I have been able to use my right arm.

One day, I will loose the use of my right arm but I can't live with fear. As

time goes by I am thankful for what I can still do.

My parents were living in the States when the doctors found the cancer. I was

one of the first cases where they discovered this kind of cancer and treated it.

Often it can develop in the brain and they don't pick up on symptoms in babies.

I have a lot to be thankful for.

I am doing better accepting that I am living with CMT but since October last

year, I haven't been able to work at all. I have chronic fatigue. I applied for

SSDI in November 2004 and I am going through the appeal process. I contacted an

attorney because it was too stressful to go through this myself. Tomorrow, I

have an appointment for SSI. I am hoping to get Medicaid and other assistance.

I would like to go back to school to become a translator French/English but I

don't have the finances or the strength to do this right now. I would like to be

able to still work a little, part time.

Thank you for the information you share and it helps to read about other peoples

pain even when you feel you are complaining because doctors will say to me they

don't understand why I have pain in my hips, my lower back.

I am going to a Pain Management clinic and this helps, I have a good neurologist

and there is a good rehab hospital here where I have orthotics done. I see a

psychiatrist to treat the depression and an endocrinologist to treat the

beginning of low thyroidism due to long term effects of radiation treatment.

Take care and remember to do something you enjoy today,