My Introduction

[Guest guest]

Hi, my name is Jan. I'm 51 years old & have had CMT since childhood. I have 2

sisters affected also. We all had surgery to correct foot deformaties as

children, but were never diagnosed. My mother told us the Dr. said it was caused

by the polio vaccine. When I got older I never believed that but never saw the

need to find out what it was if nothing could be done for it.. I suspected CMT

after seeing an article with photos in a newspaper & was concerned about it

being hereditary since by then I had 2 young children. They are now 26 & 27 & so

far show no signs so I hope they & my 1yr. old grandson will be OK. 

Before undergoing chemotherapy for breast cancer 2 years ago, I expressed

concern to my oncologist that the chemo would make me weaker. She sent me to a

neurologist who did blood testing to confirm CMT. After this I learned that

others in my mother's family have been diagnosed.  My mother passed away from

cancer in 2002 so I couldn't talk to her about it.

I suspect she knew more than she told us. I think she had a milder case of it.

It wasn't noticable until she was in her early 70's. She wasn't getting around

very well & I thought she was just getting old but I realize now that isn't

normal for someone that age. The neurologist said that some of the chemo drugs

could permanently worsen my condition but the oncologist told me that with my

cancer being stage 3 she didn't think I had a choice.

At the time I thought there wasn't any point in curing the cancer if it left me

unable to do the things I enjoyed such as gardening. I went ahead with chemo

though & it has weakened me. It's been 2 yrs since I finished & I'm continuing

to get weaker. I don't know if the chemo is the cause or the fact that I'm

getting older. Before I had to look back over years to see worsening of my

condition & now I just have to look back over months. 

My sisters have never been diagnosed but their symptoms were the

same as mine. They are older but I can't look to them to see what's ahead for

me. One passed away from cancer in 1999 & the other is in a wheelchair after a

bad fall & broken bones. She has no insurance so she doesn't get much medical

attention.

I'm very fortunate to have a great husband &  good insurance. I am now so weak

that I never walk without holding onto something or someone  & finally gave in &

started using a cane but that didn't seem to give me enough support so I'm using

a walker when I go out of the house alone. I'm scared of falling and ending up

in worse shape like my sister.

Since I've been busy with cancer treatments, I haven't been back to the

neurologist since my diagnosis. I've thought about seeing him again to find out

what I can expect in the future but from what I've been reading online, Drs

can't predict that since everyone's case is different. As you can see, I really

could use someone to talk to about this. There are all kinds of cancer support

groups available to me but nothing for CMT.  

Dealing with CMT is much worse. With cancer you either beat it or you didn't

&  after your hair grows back, life goes back to normal with the exception of

possibly missing a body part but with legs like mine who cares.. With CMT you

don't know what to expect in the future.  I don't regret going through chemo

since I have a grandson. I'm able to take care of him part time.

Some things are hard & I have to use a stroller since I can't walk around with

him but he's just fine with my way of doing things. I'm really enjoying him & as

long as I can get down on the floor & play with him & keep him fed, changed &

happy, I feel good.  He came along at just the right time to make me feel useful

again. Nothing feels better than to have a child excited to see you.

I know that there is the possibility that my daughter could be carrying CMT &

pass it on to him. She knew that before she

had a child. My neurologist didn't recommend having my kids tested. So far none

of my sisters' children or grandchildren show any signs so maybe it will stop

with us.

Sorry this is so long. I just had a lot to talk about. I've been reading other

people's stories & it really helps to know that there are others dealing with

this condition.