Not known i had CMT for many years

[chuckles333]

I think i must have had cmt since childhood i was always wobbly walking in my teens i sure people use to think i was drunk, friends remark chucks been drinking. I use to say to my Doctor but nothing ever happened. About 4 yrs ago i went to a Doctor not for the cmt walked into the surgery & she remarked that over time she had noticed i was unsteady i was sent to neuroligy for tests where i found out i suffered with cmt. So all my life when i reached the age of 73 i find out my result. My Mother must have had it now me i informed all my family to my knowledge only my Son has got it. Good luck i have to grin & bear it & make the best wit what you got.

[REGreen]

Dear Chuckles,

Sorry to hear that you have CMT in your family. Like mine, yours was off late onset, so we are much luckier than than the poor children who are severely affected from an early age. My sister and I were in our fifties before the disease became a real issue, but looking back we realised that its effects were there from our teens. Now that you know what the problem is your son should be able to get remedial treatment before his symptoms become too severe and, with good management, the progress of the disease be slowed and mitigated for him.

Good luck to both of you,

REGreen

[Curiouskid]

My teacher said that people with muscular dystrophy die at the age of 30. I then became curious because I have CMT. Can someone clear this up for me

[Amanita in reply to Curiouskid]

Hi, Curiouskid

CMT used to be considered as a kind of muscular dystrophy , but is classified separately now. Some kinds of MD certainly limit life span. In a very small nutshell - MD is a group of inherited progressive muscular diseases; CMT typically affects the peripheral (outwith the brain and spine) nerves- and because the nerves don't stimulate the muscles enough, the muscles weaken and waste over time. - starting at the extremities where the nerve signals have the furthest to travel and their quality is poorest.

The charity Muscular Dystrophy UK does include CMT under its "umbrella", however.

I hope that clears it up for you...

[Amanita]

I like your robust attitude, Chuckles !

Yes, we are the lucky ones. I hope your son isn't too badly affected. I have had problems all my life (I didn't just detest PE at school - I actually dreaded it) but they didn't stop me pursuing my chosen career- mercifully a sedentary one, and being self employed at home I mostly managed to avoid situations which showed me up. I had an unofficial diagnosis at 40 (long story but i buried the information under my psychologic carpet) and didn't seek a proper investigation until I was in my 60s and failing to cope with what life demanded of me.

We are of an age where CMT was pretty unheard-of and people just didn't talk about things like that. My mother had CMT, i know in retrospect (she died when I was in my 20s, but had an awkward gait and was very prone to tripping ) though she may not have known she had the same condition as her rather pampered "poor little" younger sister.. I'm pretty sure my parents must have known there was something amiss with me, but I guess they wanted me to get on with life and take the rough with the smooth. I can barely walk now, and have invested in a power chair, but I'm grateful for what I have been able to do in the past, even if it did not involve dancing or climbing mountains !

[chuckles333 in reply to Amanita]

Hi Amanita for your response my son is in Australia he does a lot of things like cycling & all these mad running & jumping going on assault courses etc, he says its helps. I'm seeing my Doctor on Wed on another matter do you think i should ask to see a neuroligist to look further into my CMT. Like more tests or not what do you think? Mind you i am 76 is it worth while?

[Amanita in reply to chuckles333]

Hi, Chuckles,

Really up to you, but you might find you gain information (e.g.which type you have). to pass on to your son, plus access to help with exercises, orthotics etc., as needed. Depends on how much CMT is affecting you and preventing you from doing stuff.

Sounds as though you have managed to keep going pretty well, and your son is doing things I'd never have dreamt of attempting!

I understand that while exercise is very good for people with CMT, doing too much without resting is not. We get fatigue, and have to pace ourselves.

Good luck!

[oliverdeb in reply to Amanita]

Hello Amanita . You are a great lady because you are straight to the point and give good advise, good work thank you , From Oliver De Battista

[Amanita]

Thank you for your kind words, Oliver,

I am blushing....