CMT Central

Hi all,

My name is Laura. I am 24 and I have 2 little kids under the age of 4.

I first noticed something was wrong with me when I was very little and my Mum tried to get every doctor to diagnose me with something. They all said my brain was functioning faster than my feet and that I would outgrow all my problems.

Well...I never did and things progressively got worse. When I was 20 I had my first child and then I was finally diagnosed with CMT Type1a. Because I finally had my diagnosis I felt relief but then fear, anger and disbelief because there was no cure and I had just brought a child into the world when this thing is HEREDITARY!

I was beyond angry...furious...


The reason I got such a fast diagnosis is because when I was pregnant I contracted Guillian-Barre syndrome. A quick working muscle destroying disorder that ruined the majority of all my muscles. And because I have CMT I can never replace the lost leg muscles

I had one surgery to cut the tendons in my toes to straighten them but it only worked on about 3 of my toes. My Neurologist doesnt want me to have anymore surgeries because my recovery time is very slow.

I dont have a brace yet but Im meant too. Im only 24. I dont want this.
And I do NOT want my children to suffer like I did.

This is me. Im introducing myself. My name is Laura and I have CMT.

Hello Laura & welcome to the site. I hope you will gain help & support on here, I know I have. I can understand your anger & frustration, my grandson is 4 & we do not know yet whether he has the gene,MY husband and son both have HNPP

hi Laura, welcome
my partner has CMT, and we also have 2 children under 4. whilst i have no experience of having CMT myself, i can understand your anger and frustration, and the pain when you think that your little ones could have it too.
i think the mis-diagnoses' that both CMTers and HNPPers get is unbelievable at times, how could doctors miss something that now seems so obvious? simon (my partner) was always a clumbsy child, but all of his problems were constantly put down the the brain haemorage he suffered as a child. and that was even after his mum was diagnosed. do you know if any other members of your family have CMT?
i think the decission to have a splint/brace at such a young age is a difficult one, simon (31) has finally admitted that he needs something, and is getting his tomorrow. he has a stick to walk as well, but he tends to choose to push the buggy rather than use it.
have you had your little ones tested? or are you going to wait until they are bigger or sympomatic?
i hope you find this forum as helpful as we have.

Hi there
The doctors wont test my little ones because they show no symptoms. My 3yr old has great energy and balance and a decent amount of muscle tone also. I understand CMT symptoms dont normally occur in such a young child until they are much older. My youngest is not yet walking (she just turned 1) but its her I have a feeling about. She isnt as confident with standing as her sister was and tiptoes 70% of the time. She crawls fast though, like a Road Runner hahaha.

No one else in my family has ever been diagnosed with CMT. Im the mutant
A couple of my elder cousins have MS I think or something similar. My Nana had a stroke just before she died and she seemed to recover from that quite well but some symptoms lingered on afterwards. I believe Nana had CMT at the end because she had hand weakness on both sides even tho the stroke affected one side of her body. She also had leg weakness I believe. So maybe...who knows. But for now I am the only one.

hi laura, snap! your two are the same age as mine! i fought for near on 22 months to get my two tested. (although turned out to be 19 as there was a mix up with addresses), waiting for the results now, 3 month wait we were told, which i guess is nothing after 22 months).

Hi Laura

Welcome! My little boy showed signs before he was three as did my husband which proves there are always exceptions! We enquired about testing and were told that they advised against testing them if they showed no symptoms, although they would do it if we really wanted them to, as it turned out Will did show symptoms so he was tested and it was positive, my other two have shown no symptoms so we've not had them tested to date.

Gemma x

Hi Laura,

welcome to the forum

Hi Laura!

Hi Laura good to see you. We are a very friendly bunch and support each other. Great to have you join us.

Hi Laura. Glad your here.

Medics are quacks as far as cmt is concerned!.

With cmt I decided, you have to be the expert. As afr as your kiddies go if they show symptoms thats the time I should think about getting them tested. Until then enjoy them.

I agree Jackie...

Laura - enjoy your kids and try not to worry... be watchful of any signs but don't let yourself become obsessive with worry.

I agree with the above, let life carry on and enjoy it. Only when problems come along that is the time to face them.

Hi Laura, welcome to the gang!
I know what you mean about the children, especially as you've had such a rapid deterioration in your own symptoms and mobility... it totally sucks! I hope you find someone to help alay your fears for your small ones.... just imagining the worst somehow makes it worse still for the not knowing.... if you know what I mean. It's a bit like knowing there's a potential time bomb. But don't forget that they are just as likely NOT to have it as they are... so try not to wind yourself up too much.
Take care of yourself and enjoy the forum. There are some really lovely people here.