Re: inheritance/incidence rate observation

[Guest guest]

I have often thought it is more like 70% chance of inheritance. I have 3 kids

with CMT and 2 without. We all had symptoms at age 4. I assume type 1 A.

[Guest guest]

I agree with you Gretchen when my sister got tested and found she had it the

doctor said that I didn't need to be tested because of the 50/50 chance if they

don't know or even to be on the safe side I should have been tested too and it's

only me and my sister and this doctor was from the MDA and was supposed head of

the CMT department. he was the one you saw if you had

CMT he is from the Long Island College Hospital in Brooklyn.

I think his name is Doctor Coolie or something like that. He even told that

there is no pain with CMT when I told him I was in pain but I read

a few articles from the CMTA magazine that talked about pain and he told me I

just have to live with it that was the last time I went to that place.

Tommy

[Guest guest]

Hi ,

Why 70%? I thought it was 50/50?

Thanks

Heidi

[Guest guest]

Hi Gretchen,

So far there is myself, and my two oldest boys with CMT1A and we all are

affected differently. My oldest son is affected the most and has the hardest

time. I am 35 and have been impacted less than the boys. However, some days

are very bad as far as fatigue goes. Fatigue is the worst for me. My neck and

back have great impact on my quality of life. Yet, I don't let it get me down,

with 5 kids who can get down, LOL.

Heidi

[Guest guest]

It is totally 50/50. I hope I didn't confuse anyone. Just here on the Internet I

meet so many people with CMT that have many children with it also. It just seems

higher when you see so much of it.

[Guest guest]

I don't know all the details but it is 50/50 .

**** , I am checking on this too. This is an older figure and I have

asked two CMT physicians if this is still current - considering genes jumping

chromosomes and the higher incidents of mutations. ~ Gretchen

[Guest guest]

Hi and Gretchen,

Good point. So maybe we just get stronger as humans and we will have

less likely hood of CMT. Positive thought for a moment.

Heidi

[Guest guest]

Heidi,

I don't think doctors know the percentage rate. It's just me and my sister. My

father had it and when he went down to a MDA clinic and they did a DNA test on

both my dad and sis and it came back my sis had it and my father said he had a

son they said I didn't need to get tested because it was 50/50 chance that I had

it.

about 2 years later I got hurt at work and after an MRI that was fine they did

an EMG and the neurologist knew right away I had CMT because he started asking

questions after the first shock.

I really don't know if doctors really know what the percentage rate is so

they say 50/50 to let you think they know it could be 70/40 80/90 or even 100%.

If I had kids I would get them all tested just to make sure. CMT is a fairly new

disorder and alot of doctors don't know much about it so alot of it is guessing.

I told an MDA doctor I was in pain and he said CMT isn't painful even though I

read an article on pain and CMT. Do alot of research and ask allot of questions

get second opinions.

Tommy **** Tommy, CMT is not a fairly new disorder. There are written reports as

far back as 1864 about it. Neurology, however, is a rapidly expanding field, all

I saw were orthopedists until I was 15, then I saw a neurologist for the first

time. CMT is the most common inherited neuromuscular disorder, although I'd say

and the least commonly known by many doctors. I have found that physicians

(neurologists) in private practice know more about CMT than those physicians at

MDA clinics. Most want to 'treat' CMT as muscular dystrophy, which it is not. If

I had listened to an MDA doc when I was 20, I'd most likely have spent the last

30 years wearing AFOs, only to find out I didn't need them. That plus telling me

I'd be wheelchair bound by the time I was 30. (Still not there and on my way to

my 53rd birthday) About pain and CMT, some people have a very hard time with

pain, others, like myself, only experience " burning " pain - and that is

restricted to my feet - but not all the time.

~ Gretchen

[Guest guest]

I don't know what that doctor was thinking; a 50/50 chance in genetics

means a 50/50 chance for each individual child to get it, not that if you

have kids exactly half will inherent the gene(s) and the other half

won't. It's like flipping a coin. If you ask each one to flip it, each

one will have a 50/50 chance of getting heads... so they could all end up

getting heads, or they could all get tails. It's only when the coin is

flipped many times that it's expected to balance out to 50/50.

[Guest guest]

Gretchen,

I don't think it's 50/50. both me and my sister have it and it's just the two of

us. when my father first found out he had it he went to an MDA clinic with my

sister and they both had DNA tests and they came back CMT type 2 they asked the

doctor about me but he gave them the 50/50 bull.

2 years later I got hurt at work and they did an EMG the neurologist knew right

away something was wrong so he ask me if anyone had any problems and I told him

about the CMT and he said that's what I had. I had the DNA to and it came back

the same as my dad and sis so I think the 50/50 is just a guess.

Tommy