Re: CMT symptoms/signs differing in one family - not just severity, common?..

[Guest guest]

Hi Marti, My name is ka and am new to the group. I have been

reading past posts to see if I can find out any info. I just read

yours asking questions about different members of your family. I had

never heard of cmt untill I was told I had it in 2001. My mother

died in 1999 so I couldn't ask her about it but my dad is 77 and has

never heard of it. He has trouble with his eyes and ears. He has

hearing aides now but he still cannot hear half of what you say to

him and they took his driver's license because of his eyes being so

bad. I did not know that cmt could affect your eyes or ears untill

reading your post. His feet are very flat a now are always swollen

and kinda purple, has a little trouble with balance but blames that

on his age. I do not know what type of cmt I have, was never told by

my dr. I do not seem to have trouble with my ears or eyes though. I

am 33 years old. If you have found out any info about the eyes and

ears being affected could you please pass it on to me. Thanks ka

[Guest guest]

--- In , " ericka_montgomery " <unkerdunker@h...>

wrote:

> If you have found out any info about the eyes and

> ears being affected could you please pass it on to me.

Hi ka:

Check out the links section for information on CMT and hearing

and for some descriptions of the various CMT types. I warn you,

though, that some of the less common type listings seem to base their

symptoms on case studies of a few families rather than large

samples. For example, I was born with cataracts in addition to CMT,

there is a CMT type I read about associated with cataracts but it was

also associated with facial dysmorphism and mental retardation -

" NEITHER of which I, nor anyone in my family, ever had.

I believe I have some form of CMT Type 2 as I tested negative for

CMT type 1 and there are, I'm told, a few types of CMT Type 2

associated with eye and hearing problems. There are more tests

available now to determine which subtype but I don't think my

insurance will pay for it again any time soon. You might want to

investigate it though, especially for the benefit of your

children.

Reading the CMT research can be frustrating b/c there is so much

variation in families and it is hard to make a generalization about

all of CMT, or even all of one type of CMT, based on a case study of

one family, even several generations.

You might want to ask your Dad if his hearing loss is

considered " nerve deafness " as opposed to something else; this would

tie it in more with CMT. My Dad's hearing is nerve damage as they

did lots of tests and found no other source for his hearing loss. My

Dad is also not allowed to drive, but only during night time hours,

due to poor vision.

My hearing is pretty much fine. My Dad is only recently

starting to show signs of CMT in his feet like I have, but I do not

believe that his whole CMT is delayed onset as his hearing loss was

probably as severe as my foot problems when he was my age - and this

is also related to CMT. I am the youngest of four children - three

of the four wear glasses but I am the only one diagnosed with CMT.

Good luck with your info search. Peace Marti