Re: CMT / Mothers/ Support

[Guest guest]

<< I am in a daze about this all. >>

Hi ,

It isn't unusual for CMTers to be told they are lazy, clumsy, uncoordinated,

not trying, mentally ill, and all sorts of other things before they are

finally diagnosed. My mom didn't have symptoms until she was in her 70s, but

her doctors and neurologist just told her she had suddenly gotten lazy and

exercise would fix her. Of course it didn't and she wore herself out during

the next 10 years, trying to get strong again . First they had told her it

was ALS or Amyotrophic Lateral Sclerosis, but she didn't test positive for

that so they decided on lazy. She was never diagnosed. My family referred to

it as creeping paralysis.

Tell us about your mom. Does she use a walker, a wheelchair, or ???? By " She

has eventually lost control of all of her muscles and nerves. " what do you

mean? Were you told what type she has?

What symptoms do you have? Tripping? Poor balance? High arches? Pain?

Numbness? CMT has many and varied symptoms, and CMTers are not alike in many

ways.

I took care of my mom during her 10 years of rapid decline and I know how

hard it is to watch, and then to wonder if it will be the same for you.

I have a very good neurologist who diagnosed me right away, but he only told

me my type and that nothing could be done with regard to treatment. He did

emphasize however that just because my Mom progressed a certain way was no

reason to assume I would do the same. Even within a family there are vast

variations.

I've learned a lot from the internet and from talking with CMTers in the CMT

chat support room at MGH. Many Newly diagnosed CMTers have come in,

frightened, worried, confused, and so forth. After talking with other CMTers,

and learning that we do understand and have many of the same problems, I can

often feel them relax a bit, and gradually they become more confident. It

helps to find out that we are ordinary people leading ordinary lives. Some

are married, others not. Some have children, others not. We are really just a

cross section of nice people of all ages, from all over the world. Some of

our regular chatters are in Australia and England, for example. I've met

people from 35 other countries in the room, and basically we all have the

same concerns and many similar symptoms, such as cold feet and doctors who

don't know much about CMT.

Sorry to go on and on, but sometimes it can help.

The CMT chat room is at

http://neuro-www2.mgh.harvard.edu/interaction$/chat/index

http://neuro-www3.mgh.harvard.edu/interaction$/chat/char?id=5178852 " >

A CMT MGH Chat Room

You MUST click on Check New Messages or Send or you will not see our

responses.

Talking with other folks can help a lot, just as talking and learning here

can.

Asking questions helps us know what your concerns are.